Podcasts about tuberous sclerosis complex

Meet Amanda Chagnon, mom to three beautiful boys including her youngest, Alexios, who has medical complexities due to a condition called Tuberous Sclerosis Complex. Tuberous sclerosis complex (TSC) is a rare genetic disease that causes non-cancerous tumors or lesions to grow in the brain and other areas of the body, including the eyes, lung, heart, kidneys, and skin. Amanda shares how motherhood and her nursing background have intertwined, and the blessings and difficulties of homeschooling, especially when caring for a medically complex child. Honest about her struggles, other caregivers may find this conversation refreshing and learn from the ways she has found to manage her internal and external struggles.

Series: Medical “Finding Hope in the Midst of Medical Complexity” with Andrea Bourne Foster Welcome to the podcast. This episode is full of heart and hope. Today we begin our Medical series with author, speaker, educator and advocate Andrea Bourne Foster. Andrea is the mom of 2 beautiful daughters diagnosed with tuberous sclerosis and epilepsy. She is no stranger to hospital stays and ongoing procedures and we are blessed to have this most amazing mom and advocate on with us today. Let's listen in as she shares her families story. Bio: Andrea Foster is a speaker, writer, disability advocate/educator, wife and mom. Andrea has been married to Kirk since 1998 and they are parents to four young adults. Their youngest, Audrey and Annie are identical twins who were diagnosed with Tuberous Sclerosis Complex at age five months. This resulted in further diagnoses of epilepsy, autism, intellectual disability and other medical complexities. Andrea and Kirk experienced grief at the loss of dreams and face daily challenges as they fulfill the role of parent-caregivers for their twin daughters. They live in Brampton, Ontario, Canada where Kirk is a professional Firefighter and have been part of Bramalea Alliance Church since 2001. Andrea holds a Master of Science in Education (Disability Studies), Bachelor of Theology and Early Childhood Education Diploma. She shares her experiences through speaking and writing. Her articles are published in Testimony Magazine (PAOC), Alliance.ca magazine, ChristianWeek online magazine and in Women Together online magazine. She has also been a guest writer for Key Ministry and guest blogger for the Huffington Post. She has been interviewed on 100 Huntley St., The Drew Marshall Show and by other podcast hosts. Andrea guest lectures at Bible Colleges and Seminaries, and is working to make Disability Studies part of all such curriculums. Andrea longs to help families not only cope, but also thrive and truly know the joy of the Lord, in spite of disability, disappointment and ongoing seasons of trial. She believes all people belong in the Church but understands that not all leaders are well prepared for ministry with people affected by disability. Her passion is to equip everyone for better interaction so the Body of Christ will become a place of belonging for everybody. One of her favourite things is encouraging other families affected by disability to press into Jesus through Bible study, Church connection and Corporate Worship. Connect with Us: If you enjoy this podcast please share us with others and be sure to follow us so won't miss an episode.  We'd love to hear from you so please leave us a comment or rating and connect with us on social media or on our website.  Email us Website: Instagram Facebook: Facebook Group Free Youtube Resource Library 

Send us a Text Message.This week's episode is with Nic Brown, father of Beckett. After their 2-year-old son Beckett was diagnosed with Tuberous Sclerosis Complex, a rare genetic disorder, Nic and his wife Elizabeth became dedicated advocates for the cause.In this episode, Nic shares their long journey to obtain a diagnosis for Beckett and their challenges in navigating the healthcare system for his condition. He then discusses the various symptoms associated with TSC and the complexities of managing them. We also explore how Nic and his wife, Elizabeth, ensure Beckett enjoys a fulfilling childhood while balancing the need for medical treatment—a challenging yet crucial balance for many families to maintain. Additionally, we delve into their advocacy efforts for TSC, their collaborations with organizations like the TSC Alliance, and the promising research currently underway to improve treatment for TSC symptoms. Nic concludes with some powerful and inspiring advice for parents of children who are just beginning to navigate a complex diagnosis.Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram- @neurologicaldisorderpodcastEmail me at- neurologicaldisorderpodcast@gmail.comHelpful Resources:https://www.tscalliance.org/Instagram: @becketts.beehive

Join Karaleigh in an absolutely inspired interview with Colleen Keefe Faul. Colleen is the author of “God's Precious Gift: A Special Needs Child.” At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace in God's will. Favorite takeaways: 1. God knows what you can handle, so He will give you something that is gonna affect you enough to be able to turn to Him. 2. If I didn't have faith to fall back on in this particular time I really don't know where I would have gone to. 3. God was there with me and because of that I had the insight to see all the little ways that He was consoling me every step of the way, all the little ways that He was stepping in to let me know that you're not by yourself, I'm here, I'm with you, I'm suffering through this with you because she's my child too. 4. There are miracles that lie ahead that do not make any medical sense. And they will blow you away. 5. It's gonna be through you that other people are able to see the glory of God in your story. 6. Just trust in God. You're guaranteed to suffer in this life, but what is also promised is God's faithfulness to you. You can choose to cling to Him or not, but He's there regardless. 7. You can't help but love somebody when you hear their story. Be sure to order Colleen's incredible book “God's Precious Gift: A Special Needs Child” on Amazon or from her website Godspreciousgift.com. Find more from Karaleigh at her website karaleighgarrison.com and definitely reach out if you want a custom song! --- Support this podcast: https://podcasters.spotify.com/pod/show/seekingsunshine/support

Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will.

The WV Uncommonplace Podcast invites listeners to join host JR Sparrow as he interviews inspiring people from all walks of life. In this episode, JR Sparrow interviews Colleen Faul, a wife, mother of two rambunctious toddlers, and published children's book author. Colleen also mentors families with children with special needs, as she has a daughter with a genetic disorder. JR and Collen discuss their unique experiences as parents to children with disabilities, and the trying and sometimes heartbreaking process of dealing with their loved ones' conditions. They discuss their journey towards healing and learning to let go of fear and worry, leaning into prayer and focusing on the positive. They also discuss their respective books, God's Precious Gift: A Special Needs Child, and the importance of spreading awareness and educating the public on recognizing medical events in infants and children. They emphasize that parents need to be their child's biggest voice and to fight for them when medical professionals are dismissive of their concerns. Finally, JR and Colleen direct listeners to their websites to read about their stories and get more information about the topics discussed in this episode. Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace,  was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will. https://www.GodsPreciousGift.com/This link is to my author website. There people can purchase my book, read book reviews, read about me, the author, my daughter and her condition, join my mailing list, and reach out to me with questions or mentorship. [00:00:00] The Power of Resilience: The Journey of Colleen Paul on the West Virginia Commonplace Podcast [00:03:30] Making a Neurology Appointment for a Newborn with Developmental Delays [00:07:20] The Importance of Taking Parental Concerns Seriously: The Story of the Protagonist's Daughter. [00:10:51] Navigating the Diagnosis of Infantile Spasms [00:14:40] Topic: Coping with a Child's Genetic Disorder and Developmental Delays [00:18:29] The Main Topic: Parenting and Caring for a Special Needs Child with Love and Understanding [00:22:22] The Journey of Understanding the Gift of a Special Needs Child [00:26:09] The Strength of Support: Coping with Grief Together as a Couple. [00:29:54] The Strength and Healing of a Family in Difficult Times [00:33:17] Grace and Redemption in Difficult Times [00:40:59] Agreeing and Disagreeing With Criticism on Self-Publishing [00:44:40] The Benefits of Creative Pursuits in Growing as an Artist or Creator [00:48:13] Topic: Self-Publishing a Book and the Journey Along the Way [00:51:47] God's Love for Children with Special Needs [00:55:58] Topic: Exploring the Challenges of Parenting a Child with Special Needs [01:00:16] The Severity of Infantile Spasms and What to Do [01:03:58] Additionally, the speaker encourages parents to ask for a second opinion if they feel that their child's diagnosis and treatment plan is not sufficient. [01:11:36] Taking Chances and Overcoming Adversity [01:15:06] The Power of Love and Perseverance: Teaching it to Your Children

In episode 161, Colleen Faul hits us early with a phrase that would catch many off-guard: "blessed with special needs." When she describes her daughter's journey with Infantile Spasms and Tuberous Sclerosis Complex, she is aware many would see Gracie's life as unfortunate; yet God has shown her and her family how He is doing abundantly more than they could ask or imagine. You may see things in your own life that seem unfruitful or wrong, and struggle to believe it could be a blessing; yet God may be in the process of taking you to heights you couldn't -- or wouldn't -- have trod otherwise. How has God shown you are blessed amidst hardship? You can learn more about Colleen and her content here: https://www.godspreciousgift.com/ https://www.facebook.com/colleenkeefefaulauthor https://www.linkedin.com/in/colleenkeefefaul/ https://www.instagram.com/collleenkeefefaul/ ~ Check out our website: www.WhereDidYouSeeGod.com  ~ Want a free resource?  Check out "A Journey through Revelation (for the person that doesn't want to read Revelation)": https://www.wheredidyouseegod.com/revelation You can also purchase a Kindle or paperback version on Amazon at tinyurl.com/WDYSGRevelation ~ We now have apparel for you to wear as an amazing conversation-starter!  https://www.bonfire.com/store/where-did-you-see-god/ ~ Have a story? You can leave a brief message at (804) 372-3836, or www.facebook.com/wheredidyouseeGod/ ~ The music in this episode is "You'll walk, you'll run" by Urban Doxology, from their amazing album "Bread for the Journey." ~ If you appreciate what God is doing through this podcast, you can help keep it going through financial support. Gifts can be processed at  https://worldoutreach.org/707  ~ Learn more about how God's calling us: Pray: tinyurl.com/GrangerPray Follow: tinyurl.com/GrangerList Give: worldoutreach.org/707 ~ #suffering #dialogue #Godstillspeaks #WDYSG #conversation #specialneeds #disability #blessed #InfantileSpasms #TuberousSclerosisComplex #TSC #podpros #podmatch #madewithZencastr --- Send in a voice message: https://podcasters.spotify.com/pod/show/wheredidyouseegod/message Support this podcast: https://podcasters.spotify.com/pod/show/wheredidyouseegod/support

In this episode I interview Colleen Faul, first time self-published author of God's Precious Gift: A Special Needs Child. At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace in God's Will. www.godspreciousgift.com Marisa Grace shares life stories of struggle and triumph throughout her own life and through the lives of the guests that she interviews as a way to help others have breakthroughs and find hope in their own life! Marisa is a Transformational Therapist, Hypnotherapist and Career Development Coach, for more information or to book a session with Marisa head to: https://www.martppractice.com --- Support this podcast: https://podcasters.spotify.com/pod/show/marisa-grace/support

Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will. https://www.godspreciousgift.com/

Topic:  A Big-Hearted Brain Surgeon   Guest: Dr. Howard Weiner   Bio:    Dr. Weiner is Chief of Neurosurgery at Texas Children's Hospital. Dr. Weiner has become one of the country's leading pediatric epilepsy surgeons, attracting patients from across the United States and abroad because of his innovative approach. Over the last 20 years, he has become a recognized national and international leader in the surgical treatment of childhood epilepsy, and has been a pioneer in advancing the care of children with Tuberous Sclerosis Complex, for which he is considered one of the world's leading experts. His expertise also includes the operative treatment of childhood brain tumors, spasticity, hydrocephalus, congenital malformations, tethered cord, chiari malformation, craniosynostosis, and spina bifida. In this episode we explore: 1. The 5am Club 2. Finding Balance in a Frenetic World 3. Mentorship 4. Family as the Priority 5. What is Perfection? 6. Work Hard/Be Nice and much more!

How do you know when to start treatment for children with tuberous sclerosis complex (TSC)-related seizures? Join Drs Wirrell, Bebin, and Roberts as they discuss cases in recognizing and managing TSC. Credit available for this activity expires: 08/23/23 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/979571?src=mkm_podcast_addon_979571

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care.Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home.Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care. Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home. Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

In today's episode Rhonda does an interview with Andrea Foster. Andrea is a mom of four teenagers. Her two youngest, Annie and Audrey, are twins who were diagnosed with Tuberous Sclerosis Complex at five months old. Andrea and her husband Kirk have experienced deep grief – at the loss of dreams and all that they expected their lives to be. They face daily challenges as they raise children with special needs as well as their two typical children. Having two children with profound intellectual disabilities has been challenging, rewarding and heart breaking for Andrea and Kirk and at times they have felt unequipped to handle all that is required of them. Still, they continue to find strength in the Lord – through prayer and in His Word and through being part of the Church Body. They have been enabled to not only survive but thrive in the life they have been given and know true joy in their circumstance. Andrea has a heart for disability ministry and longs to help families affected by disability to truly experience the joy of the Lord and find a place of belonging within the Church Body.

Andrea and Ryan's son, Parker, is living with tuberous sclerosis complex (TSC). During an ultrasound in the thirty-fifth week of Andrea's pregnancy, her doctor discovered that Parker had a cluster of tumors in his heart. These tumors, known as rhabdomyoma, were a sign that he might have TSC. Five days after he was born, Parker had heart surgery to remove these tumors and his diagnosis was confirmed. Living with TSC means that Parker and his parents never know when he might have seizures, where new tumors might appear, how these tumors might affect him or what other symptoms he might experience in the future. “Our job is to help prepare Parker for the hurdles he might encounter living with TSC,” Ryan explains. Clayton Beard, Ph.D., Chief Scientific Officer at BridgeBio Gene Therapy, joins the conversation to provide an overview of TSC. He describes the many challenging symptoms that can come with TSC and he explains how TSC can result from either a spontaneous mutation or it can be inherited as an autosomal dominant trait.

Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

What is the prevalence of epilepsy in individuals with autism? Brian Moseley, MD explores the connection and influencing factors. Series: "Autism Tree Project Annual Neuroscience Conference" [Health and Medicine] [Science] [Show ID: 37660]

Driving to get her daughter on Halloween, Jill gives an unplugged, unedited monologue, on the energetics of Tuberous Sclerosis Complex related to her personal lived experience. How considering and understanding "energetics" applicable to many chronic illnesses, -the frustrations, joys, the feelings, thoughts and emotions that are involved are equally, if not more important than to that which we can easily see, and apply logic and clinical principles. Gahhh! There's so much more that we don't tap that would help. Help empower the entire community realize their own strength and what we are walking through daily, what we have learned and what we know. Creating a partnership with those in the system upon whom many must currently depend for care. She discusses the importance of being present, how challenging this can be, and how using your intuition can be the gateway to presence. Overall, how incredibly important it is to consider the energetics of chronic illness including family dynamics when navigating one's role as an affected individual, parent, or caregiver. Love to all out there walking these rugged paths in our very broken systems of care, those within the systems trying to help, and those of us who have disempowered ourselves thinking it would serve a greater good when it has only made us discount what we know in our heart and soul.

JIll gives a synopsis of why, in her opinion, Tuberous Sclerosis Complex -"benign" tumors in every vital organ, probably every organ of the body, should be a template for shining a light on the cracks in our systems of care, AND illuminating a new path forward. Factoring in the energetics of TSC, aka the emotional experience involved in living with and/or advocating for someone with this condition will connect the dots, between the visible manifestations and the invisible manifestations and how the interplay of mind-body-spirit, and our growing understanding of it, does influence outcomes. This should all be remembered and cataloged! Jill walks a razor's edge close to her breaking point at times, for good reason. She is playing her long game and knows that sharing the joys and pains of our experience with the energetics of TSC, IS worth being shared. We as a kind...humankind, do not seem to understand that when you throw a wrench in the gears, metaphorically, in a bodily organ, it has the potential to negate years of devoted attention to observing, and one is at risk of getting caught like a wrench in the gears yourself, in the complicated way that loving someone with TSC makes your heart grow. At the same time as you realize the many challenges, disconnects, miracles, tragedies, grief, loss, anger, fears, with which all affected have been faced and the frustration to integrate the full lived experience in such a way that you can build on this knowledge and heal and move forward to a place where there is hope that the full monty of managing this condition was understood and valued by our systems of care for the deep knowledge it provides and the chance to improve on what we know, for humankind forever. And you still love it all anyway. It goes easier if you have to accept that a wrench may be thrown in the gears...at any given moment, and undo everything you may have done for years on end, and hold onto your deep inner wisdom that you are here for a reason, you are deeply worthy of speaking out loud when things with which you are faced don't make sense, when there are no good answers and life is dragging you to the edge of the drain of despair daily. You know this, live it, get up and show up and still find love is the answer and the way through, but boy oh boy, please listen to me, listen to us, and value our deep lived experience coupled with the depths of love we have harvested in our hearts and learn. If I/we/you can walk through this, we all can. I love you.Title inspired by Alison McDowell and her blog, https://wrenchinthegears.com

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

Go online to PeerView.com/EME860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts discuss recent updates to recommendations in the diagnosis, surveillance, and management of tuberous sclerosis complex. Upon completion of this activity, participants should be better able to: Utilize clinical and genetic diagnostic criteria to identify patients with tuberous sclerosis complex (TSC) early in the disease course, Employ updated consensus recommendations for the surveillance of patients with TSC throughout the course of their disease, Apply updated consensus recommendations for the management of patients with specific disease manifestations associated with TSC.

In the March 2021 episode of the JAAPA Podcast, co-hosts Lena Ward, PA-C and Brandon Cherry, PA-C review CME articles on tuberous sclerosis complex and on early pregnancy loss. Our co-hosts also discuss new research on the gender wage gap in the PA profession and reflect on JAAPA’s latest Art of Medicine essay.

Lisa Larson is a mother, daughter, Senior Care Advocate, Learning Assistant, Co-Owner of TSC Talks, LLC and all-around awesome human being. Lisa started working on the podcast in 2018 after hearing the resilience, intensity complicated nature of the challenges people with Tuberous Sclerosis Complex were dealing with and offered to help me edit. The rest is history. We’ve evolved considerably since our early days and expanded the breadth and depth of our content, from purely TSC related to the broader “special needs” umbrella, then cannabis, cannabinoid medicine, and alternative health to where we are today, highlighting the cracks in the system, hoping to shed some light, inspiration and provide resources and information on practical ways to buck the system. Well….not buck it, but bolster, integrate and enrich our lives with stories of others who have found ways to improve quality of life without increasing dependence. Lisa’s story is the start of this content thread. Here’s a few lines from the podcast transcript to give you a bit of a teaser… “Lisa, in the last year, actually in 2020, has transitioned members of her family that are older, into her living space, and I've just kind of watched it from outside. And it's been quite informative witnessing the challenges and the rewards. We thought it would be great for Lisa to come on. And just talk a little bit about, what made her decide to do this, how it happened, and, shed light on her process. I think this is a common theme for a lot of people is what do we do when our parents get older…” Here is a link to the full transcript of the podcast: https://otter.ai/u/OpicltOInNrjw4bb31gSRck6oIo Lisa’s links: Facebook: https://www.facebook.com/lisa.o.larson Instagram: https://www.instagram.com/lisalarson7/

Lisa Larson is a mother, daughter, Senior Care Advocate, Learning Assistant, Co-Owner of TSC Talks, LLC and all-around awesome human being. Lisa started working on the podcast in 2018 after hearing the resilience, intensity complicated nature of the challenges people with Tuberous Sclerosis Complex were dealing with and offered to help me edit. The rest is history. We’ve evolved considerably since our early days and expanded the breadth and depth of our content, from purely TSC related to the broader “special needs” umbrella, then cannabis, cannabinoid medicine, and alternative health to where we are today, highlighting the cracks in the system, hoping to shed some light, inspiration and provide resources and information on practical ways to buck the system. Well….not buck it, but bolster, integrate and enrich our lives with stories of others who have found ways to improve quality of life without increasing dependence. Lisa’s story is the start of this content thread. Here’s a few lines from the podcast transcript to give you a bit of a teaser…“Lisa, in the last year, actually in 2020, has transitioned members of her family that are older, into her living space, and I've just kind of watched it from outside. And it's been quite informative witnessing the challenges and the rewards. We thought it would be great for Lisa to come on. And just talk a little bit about, what made her decide to do this, how it happened, and, shed light on her process. I think this is a common theme for a lot of people is what do we do when our parents get older…”Here is a link to the full transcript of the podcast: https://otter.ai/u/OpicltOInNrjw4bb31gSRck6oIo Lisa’s links:Facebook: https://www.facebook.com/lisa.o.larson Instagram: https://www.instagram.com/lisalarson7/

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC. Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and also Hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21 Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex, each with varying effect Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com/ or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more. Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34 “we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience. Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking” They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience. Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking..." Brooke’s links: https://www.instagram.com/_b3mor34u_/ YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w Jill: https://linktr.ee/jillwoodworth

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC.Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and also Hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex, each with varying effect Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com/ or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more.Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34 “we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking”They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with my daughter. But listen, that boat was sinking..."Brooke’s links: https://www.instagram.com/_b3mor34u_/ YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w Jill: https://linktr.ee/jillwoodworth

Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2020.08.26.267260v1?rss=1 Authors: Niere, F., Cacheaux, L. P., Uneri, A., Reynoldson, C., Penaranda, J., Taylor, W. C., Craft, S., Keene, C. D., Ma, T., Raab-Graham, K. F. Abstract: L-type voltage-dependent Ca2+ channels (L-VDCC) integrate synaptic signals to facilitate a plethora of cellular mechanisms. L-VDCC dysfunction is implicated in several neurological and psychiatric diseases. Despite their importance, signals upstream of L-VDCC activity that regulate their channel density, however, are poorly defined. In disease models with overactive mammalian target of rapamycin complex 1 (mTORC1) signaling (or mTORopathies), including tuberous sclerosis (TS) and Alzheimer's disease (AD), we report a novel mechanism downstream of mTORC1 signaling that results in a deficit in dendritic L-VDCC activity. Deficits in L-VDCC activity are associated with increased expression of the mTORC1-regulated RNA-binding protein DJ-1. DJ-1 binds the mRNA coding the auxiliary Ca2+ channel subunit 2{delta}2 responsible for shuttling L-VDCC to the membrane and represses its expression. Moreover, this novel DJ-1/2{delta}2/L-VDCC pathway is disrupted in human AD and preclinical models of AD and TS. Our discovery that DJ-1 directs L-VDCC activity and L-VDCC-associated protein 2{delta}2 at the synapse suggests that DJ-1/2{delta}2/L-VDCC is a common, fundamental pathway disrupted in TS and AD that can be targeted in clinical mTORopathies. Copy rights belong to original authors. Visit the link for more info

This is the full-length audio recording of our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with Tuberous Sclerosis Complex. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you! Get info at: https://tsctalks.com Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21 To order Forest Bathing and learn more: https://tsctalks.com This is the full-length video from our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with TSC. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you! Get info at: https://tsctalks.com Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21 To order Forest Bathing and learn more: This is the full-length video from our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with TSC. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you! Get info at: https://tsctalks.com Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21 To order Forest Bathing and learn more: https://igg.me/at/forestbathing/x#/ https://tsctalks.com

This is the full-length audio recording of our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with Tuberous Sclerosis Complex. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you!Get info at: https://tsctalks.comBrooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21To order Forest Bathing and learn more: https://tsctalks.comThis is the full-length video from our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with TSC. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you!Get info at: https://tsctalks.comBrooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21To order Forest Bathing and learn more: This is the full-length video from our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with TSC. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in different organs of the body. They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components, terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you!Get info at: https://tsctalks.comBrooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Check out her Facebook here: https://www.facebook.com/brookey21To order Forest Bathing and learn more: https://igg.me/at/forestbathing/x#/https://tsctalks.com

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope. I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!” My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion. As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis. I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you” Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you” Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening, you know, what is going to happen after this? How am I going to be impacted, I wasn't educated. All I knew was that, you know, one of my tumors in my brain needed to come out and it needed to come out as soon as possible. So, I think that being who I am today, as well, I could say that if I didn't have brain surgery, I wouldn't know who I was, either. Because that was like my, my greatest achievement, you know, to survive something so traumatic like that. A lot of people don't come out of that. So I'm so blessed. And I think that going through that and now being so healthy today, is something that is just amazing, something that I had to do something that I had to face, I couldn't go around it, I can wait a year for it to be done” Brooke added, “I'm really thankful you talked about the brain surgery. My daughter had it when she was three, but like, that's what she lives off of…” this happened to me.” I always tell her it does not define you. But it is so hard to get that out of their head when they go through so much stuff and like you said, you blocked things out.” I also would acknowledge how important it is to not let these major medical events that are outside of one’s control define, but give one a sense of passion and purpose having gone through something most people never experience, living through it, and owning the courage and bravery it takes to reorient and not let memory of these traumatic events hold one hostage. Brooke elaborates on her own challenges with the mental health aspects of TSC, “Nobody understood my mental illness, you know, they were supportive and they kept me going, but until I got older and really dealt with it, I was in my home and wouldn't leave, and it was a really bad place. I was alone, it was devastating to my life. So to see you at 21, just, you know, I know that there still rough days, but you're glowing, you're doing incredible. And I am so thankful that you're reaching out to these other girls. I know that's been a huge support for my daughter, having her camp friends that all had TSC to talk to because you do get very lonely, nobody understands you, they don't even know what to say to you. So they say nothing and then you're left in a hole, you know. So I'm really thankful to hear your story and to hear you rise up from all this. I think it's great. I know there's going to be tough days, like you said, there's no cure, but you have to like rise above that and you're doing very well. You're doing a really good job.” I would echo that statement and will wrap up with this quote from Brielle on how she came to use journaling and ultimately vlogging to help her process her experiences and cope, “Something that I was actually very opposed to doing because I was so in denial that it would help me is journaling. I had an empty journal in my room that my dad gave me, and I put it all the way in the back of the drawer. And I refused to even write my name. I didn’t even want to draw in it. I did not want to even think about putting my feelings down. And one day I was feeling so terrible. And I said, I just want to get this out, even if this is the first and last time that I write in it, and ever since that day, I have not stopped writing in it every single night. Just like Brooke said, I will write, “you got this now, tomorrow's gonna be better.” You know, ask yourself the question, like, let me know how tomorrow goes and then tomorrow I'll write down today. Especially now that I can't see my therapist, I need a means of releasing how I've been feeling and I actually made a video about anxiety and depression as well. Writing in the journal and giving yourself motivational words, you know, it doesn't have to be something cliche or something that someone else told you. It’s something that is individualized to you. So yeah, I write like 15 pages written ..or I'll write like three pages a day of just thoughts and thoughts. And sometimes my hand will cramp up and I'll say, wow, you know, today was a rough day. Just go for something. Because sometimes it's just, very hard” Both these two women are powerful examples of coping with some off the beaten path challenges that few will encounter in their lifetimes and both have chosen to accept the fact that they have this condition, are not letting it define them but remain grateful for being able to be here now and find joy, meaning despite the daily roller coaster of circumstance. Tools mentioned for coping are journaling, vlogging, connecting with others that can relate and a lot of self-love, self-compassion and reminders on the mirror of just how awesome they are. Because it is so true. I was inspired and moved listening to both of these women and am glad to share this episode with my own daughters, as well as many others within and without the TSC community, who have dealt with and are dealing with similar issues related to self-esteem, mental health, and staying positive in this crazy world we live in. This episode is dedicated to my friend Paul Collins who passed away recently. Paul was a unique and inspirational individual I met in the local 12 step program when I had hit a personal bottom dealing with addiction and mental health stressors that led to a serious psychotic break. Paul inspired me to live the wisdom of the saying, “you’re only as sick as your secrets” which in part inspired the creation and evolution of this podcast. Thanks for listening! Brielle’s links: YouTube: https://www.youtube.com/channel/UCfFMGjj9KrOFG-k1d-MKXjQ Facebook: https://www.facebook.com/brielle.izabelle Brooke’s links: Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha

I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!”My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion.As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis.I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you”Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you”Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening, you know, what is going to happen after this? How am I going to be impacted, I wasn't educated. All I knew was that, you know, one of my tumors in my brain needed to come out and it needed to come out as soon as possible. So, I think that being who I am today, as well, I could say that if I didn't have brain surgery, I wouldn't know who I was, either. Because that was like my, my greatest achievement, you know, to survive something so traumatic like that. A lot of people don't come out of that. So I'm so blessed. And I think that going through that and now being so healthy today, is something that is just amazing, something that I had to do something that I had to face, I couldn't go around it, I can wait a year for it to be done”Brooke added, “I'm really thankful you talked about the brain surgery. My daughter had it when she was three, but like, that's what she lives off of…” this happened to me.” I always tell her it does not define you. But it is so hard to get that out of their head when they go through so much stuff and like you said, you blocked things out.” I also would acknowledge how important it is to not let these major medical events that are outside of one’s control define, but give one a sense of passion and purpose having gone through something most people never experience, living through it, and owning the courage and bravery it takes to reorient and not let memory of these traumatic events hold one hostage. Brooke elaborates on her own challenges with the mental health aspects of TSC, “Nobody understood my mental illness, you know, they were supportive and they kept me going, but until I got older and really dealt with it, I was in my home and wouldn't leave, and it was a really bad place. I was alone, it was devastating to my life. So to see you at 21, just, you know, I know that there still rough days, but you're glowing, you're doing incredible. And I am so thankful that you're reaching out to these other girls. I know that's been a huge support for my daughter, having her camp friends that all had TSC to talk to because you do get very lonely, nobody understands you, they don't even know what to say to you. So they say nothing and then you're left in a hole, you know. So I'm really thankful to hear your story and to hear you rise up from all this. I think it's great. I know there's going to be tough days, like you said, there's no cure, but you have to like rise above that and you're doing very well. You're doing a really good job.”I would echo that statement and will wrap up with this quote from Brielle on how she came to use journaling and ultimately vlogging to help her process her experiences and cope, “Something that I was actually very opposed to doing because I was so in denial that it would help me is journaling. I had an empty journal in my room that my dad gave me, and I put it all the way in the back of the drawer. And I refused to even write my name. I didn’t even want to draw in it. I did not want to even think about putting my feelings down. And one day I was feeling so terrible. And I said, I just want to get this out, even if this is the first and last time that I write in it, and ever since that day, I have not stopped writing in it every single night. Just like Brooke said, I will write, “you got this now, tomorrow's gonna be better.” You know, ask yourself the question, like, let me know how tomorrow goes and then tomorrow I'll write down today. Especially now that I can't see my therapist, I need a means of releasing how I've been feeling and I actually made a video about anxiety and depression as well. Writing in the journal and giving yourself motivational words, you know, it doesn't have to be something cliche or something that someone else told you. It’s something that is individualized to you. So yeah, I write like 15 pages written ..or I'll write like three pages a day of just thoughts and thoughts. And sometimes my hand will cramp up and I'll say, wow, you know, today was a rough day. Just go for something. Because sometimes it's just, very hard”Both these two women are powerful examples of coping with some off the beaten path challenges that few will encounter in their lifetimes and both have chosen to accept the fact that they have this condition, are not letting it define them but remain grateful for being able to be here now and find joy, meaning despite the daily roller coaster of circumstance. Tools mentioned for coping are journaling, vlogging, connecting with others that can relate and a lot of self-love, self-compassion and reminders on the mirror of just how awesome they are. Because it is so true. I was inspired and moved listening to both of these women and am glad to share this episode with my own daughters, as well as many others within and without the TSC community, who have dealt with and are dealing with similar issues related to self-esteem, mental health, and staying positive in this crazy world we live in.This episode is dedicated to my friend Paul Collins who passed away recently. Paul was a unique and inspirational individual I met in the local 12 step program when I had hit a personal bottom dealing with addiction and mental health stressors that led to a serious psychotic break. Paul inspired me to live the wisdom of the saying, “you’re only as sick as your secrets” which in part inspired the creation and evolution of this podcast. Thanks for listening! Brielle’s links: YouTube: https://www.youtube.com/channel/UCfFMGjj9KrOFG-k1d-MKXjQ Facebook: https://www.facebook.com/brielle.izabelle Brooke’s links:Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha

Latrice Hamilton, CO-AUTHOR It is TIME!! NEW BOOK ALERT! Women of Worth, An Anthology: Beautiful. Valuable. Beloved.  Collections of stories and testimonials of individuals who have MADE LIFE HAPPEN, by overcoming, prevailing, and facing life head-on. Knowing Our WORTH has been the foundation of GROWTH and DEVELOPMENT!  The phenomenal individuals authoring this book were able to recognize their destiny by transforming their lives to be all that God intended. #WOW As you read my story, and the stories of others in the book, be inspired by the unrelenting WILL, DESIRE, and POWER to know your worth.  “Now, hold up your head and walk out your Life Journey with Bold Faith.  You got            this!  Believe it!  I am a mother of a child diagnosed with a rare medical illness of Tuberous Sclerosis Complex, Autism, and Epilepsy AND I am so much More!  My life’s circumstances do not definewho I am!  I am God’s child and I stand on His promises for my life.  I am Beloved. I am Beautiful.  I am Valued.  I am a Winner.  I am Worthy and so are You!” Author:  Latrice Hamilton  PRE-ORDER your hardcopy #WomenOfWorth #IAM$27.95 including shipping! https://www.paypal.me/LatriceHamilton

In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations.Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about.“It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know, for TSC, associated neuro psychiatric disorders across all those different levels. We wanted a simple word that you and I can talk about TAND in one word, and then we can start to break it up, rather than to talk about all these fuzzy words that in a psychiatrist often like to talk about, that nobody follows. Right? So that was really the reason to give us that you can talk about it.”Alexis shares her own lived experience with TAND as well; “(my mother) She said I was having temper tantrums at school starting at about age seven. And she actually got to a point where she had to speak to my doctor say, look, you know, is it the TSC that's causing this or is it anger, or is it discipline issues? Or, you know, how do I deal with this? And so, my pediatric neurologist, her advice at the time was-there's no excuse for bad behavior. So, my mom had to put me on a strict discipline, freedom within boundaries sort of routine. I had strict routines in terms of schooling. Whether I was homeschooled or not, you know, you wake up at seven, you started school at eight, you work 'til two. And after that, you could do what you wanted. You took your medicine at seven, you know, they were they were structured systems in place so that I didn't have an excuse, and it's been very helpful. I did go through the TAND checklist last night, actually. And I kind of giggled because I realized I do kind of struggle to in terms of organization, I think you called it executive functioning”I am personally passionate about TAND because of the impact it had on our entire family. There tends to be a ripple effect when dealing with a lot of dysregulated and unpredictable behavior on top of seizures for long time periods and the whole family develops dysfunctional ways of coping. So when I heard Professor de Vries talk about TAND, first on YouTube and then in person at the World TSC Conference in 2017 in Dallas, the entire history of our life with TSC started to make more sense. More regarding the TANDem project; “And so what the TANDem project will do is three things: One, we're going to make a self-report version of the checklist, so that you either as a parent or caregiver or an individual that lives at TSC can fill it in yourself. Two-then we're going to put it into an app so that you can download an app and fill it in on the app. Three-And then we are going to create an expert group of people, consensus guidelines for treatment, next steps interventions for all these seven clusters of TAND difficulties. And then we're going to build them into the app so that when you sit down and you fill in the app for yourself or for your son or daughter, and you click on it, it will show you your child’s cluster profile. And you can click on it and it'll tell you what you can do about your that specific type of manifestation. And it will also tell you what the clinicians and the physicians ought to be doing as the next steps for your TAND profile. The TANDem project is just starting. We will create a website. And as soon as there are updates, we will inform people like you and the TS Alliance and the TCI, etc. So, the people just follow the story and give us input into the progress of the project over the next four years. It’s funded for four years by a Belgian foundation. It's called the King Baudouin Foundation. And they have funded us basically to develop this app, to validate the app and we will use people in the US and different parts of the world to make sure that we have something that we think is a good product that can then be launched for anybody in the world to use towards the end of the project. So that's the idea. You can see it's very practical. And it's really about empowering families and people who live with TSC. Because we know we can't wait until you can get somebody who knows about TAND- we need to give you the tools. I also don't want everyone to think that TANDem will solve all the problems of TAND in the world, but I think it's the kind of next step that we're taking in the community with people in the community that I'm really excited about.”From Alexis: “Education is where my heart lies for kids with TAND or any other genetic disorder, autism, anything else of because there is none in South Africa. All the children get sent to a special needs school and they get cheated and it’s frustrating.”Thanks for listening and many many thanks to both Professor Petrus de Vries and Alexis Minnaar for being willing to engage in this important conversation and shed some light on the lived and learned experience of TSC & TAND. WE will be watching and waiting to hear more on the TANDem project as it develops. Find us at: https://tsctalks.com Professor Petrus de Vries’ links:University of Cape Town: http://www.psychiatry.uct.ac.za/psych/staff/petrus-de-vriesCentre For Autism Research: http://www.cara.uct.ac.za/petrus-de-vriesTANDem press release: https://www.tsalliance.org/international-tand-research-project-awarded-funding/Professor de Vries discussing TANDem: https://www.facebook.com/watch/?v=699529333889383Recent article: https://www.spectrumnews.org/opinion/viewpoint/offer-support-young-autistic-children-south-africa/Instagram: https://www.instagram.com/profpetrusdevries/TSC South Africa: https://www.facebook.com/TSSouthAfrica/Alexis Minnaar links: Blog: http://theycallmetsc.blogspot.com/Facebook: https://www.facebook.com/alexisbilyardLiving with TSC Facebook: https://www.facebook.com/theycallmetsc/Instagram: https://www.instagram.com/they_call_me_tsc/Previous podcasts on TSC Talks: https://www.spreaker.com/episode/18952329 and https://www.spreaker.com/episode/19010713

In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations. Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND. Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about. “It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know, for TSC, associated neuro psychiatric disorders across all those different levels. We wanted a simple word that you and I can talk about TAND in one word, and then we can start to break it up, rather than to talk about all these fuzzy words that in a psychiatrist often like to talk about, that nobody follows. Right? So that was really the reason to give us that you can talk about it.” Alexis shares her own lived experience with TAND as well; “(my mother) She said I was having temper tantrums at school starting at about age seven. And she actually got to a point where she had to speak to my doctor say, look, you know, is it the TSC that's causing this or is it anger, or is it discipline issues? Or, you know, how do I deal with this? And so, my pediatric neurologist, her advice at the time was-there's no excuse for bad behavior. So, my mom had to put me on a strict discipline, freedom within boundaries sort of routine. I had strict routines in terms of schooling. Whether I was homeschooled or not, you know, you wake up at seven, you started school at eight, you work 'til two. And after that, you could do what you wanted. You took your medicine at seven, you know, they were they were structured systems in place so that I didn't have an excuse, and it's been very helpful. I did go through the TAND checklist last night, actually. And I kind of giggled because I realized I do kind of struggle to in terms of organization, I think you called it executive functioning” I am personally passionate about TAND because of the impact it had on our entire family. There tends to be a ripple effect when dealing with a lot of dysregulated and unpredictable behavior on top of seizures for long time periods and the whole family develops dysfunctional ways of coping. So when I heard Professor de Vries talk about TAND, first on YouTube and then in person at the World TSC Conference in 2017 in Dallas, the entire history of our life with TSC started to make more sense. More regarding the TANDem project; “And so what the TANDem project will do is three things: One, we're going to make a self-report version of the checklist, so that you either as a parent or caregiver or an individual that lives at TSC can fill it in yourself. Two-then we're going to put it into an app so that you can download an app and fill it in on the app. Three-And then we are going to create an expert group of people, consensus guidelines for treatment, next steps interventions for all these seven clusters of TAND difficulties. And then we're going to build them into the app so that when you sit down and you fill in the app for yourself or for your son or daughter, and you click on it, it will show you your child’s cluster profile. And you can click on it and it'll tell you what you can do about your that specific type of manifestation. And it will also tell you what the clinicians and the physicians ought to be doing as the next steps for your TAND profile. The TANDem project is just starting. We will create a website. And as soon as there are updates, we will inform people like you and the TS Alliance and the TCI, etc. So, the people just follow the story and give us input into the progress of the project over the next four years. It’s funded for four years by a Belgian foundation. It's called the King Baudouin Foundation. And they have funded us basically to develop this app, to validate the app and we will use people in the US and different parts of the world to make sure that we have something that we think is a good product that can then be launched for anybody in the world to use towards the end of the project. So that's the idea. You can see it's very practical. And it's really about empowering families and people who live with TSC. Because we know we can't wait until you can get somebody who knows about TAND- we need to give you the tools. I also don't want everyone to think that TANDem will solve all the problems of TAND in the world, but I think it's the kind of next step that we're taking in the community with people in the community that I'm really excited about.” From Alexis: “Education is where my heart lies for kids with TAND or any other genetic disorder, autism, anything else of because there is none in South Africa. All the children get sent to a special needs school and they get cheated and it’s frustrating.” Thanks for listening and many many thanks to both Professor Petrus de Vries and Alexis Minnaar for being willing to engage in this important conversation and shed some light on the lived and learned experience of TSC & TAND. WE will be watching and waiting to hear more on the TANDem project as it develops. Find us at: https://tsctalks.com Professor Petrus de Vries’ links: University of Cape Town: http://www.psychiatry.uct.ac.za/psych/staff/petrus-de-vries Centre For Autism Research: http://www.cara.uct.ac.za/petrus-de-vries TANDem press release: https://www.tsalliance.org/international-tand-research-project-awarded-funding/ Professor de Vries discussing TANDem: https://www.facebook.com/watch/?v=699529333889383 Recent article: https://www.spectrumnews.org/opinion/viewpoint/offer-support-young-autistic-children-south-africa/ Instagram: https://www.instagram.com/profpetrusdevries/ TSC South Africa: https://www.facebook.com/TSSouthAfrica/ Alexis Minnaar links: Blog: http://theycallmetsc.blogspot.com/ Facebook: https://www.facebook.com/alexisbilyard Living with TSC Facebook: https://www.facebook.com/theycallmetsc/ Instagram: https://www.instagram.com/they_call_me_tsc/ Previous podcasts on TSC Talks: https://www.spreaker.com/episode/18952329 and https://www.spreaker.com/episode/19010713

In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life. Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!

In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life. Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!

In Part 1 of this two-part episode, Alexis Minnaar, an English and Geography teacher from South Africa, and young adult living with Tuberous Sclerosis Complex shares the process of coming to terms with having TSC and learning how to manage the condition herself. When she left home and entered college, living away from home for the first time and studying and working, she describes feeling overwhelmed with this realization "like I got hit with a ton of bricks". Her system for tracking manageable variables in several different journals is really interesting and a positive outcome of struggling hard to accept the monumental challenges TSC case management can present. At a time when most young adults are exploring the freedoms of independence, Alexis had to learn to completely avoid caffeine closely monitor her diet, minimize any alcohol consumption, avoid overexertion during exercise and pay attention to her stress levels. Starting off in a Montessori school, she learned to read and write and from quite an early age. The Montessori system, developed by an Italian woman who's daughter had epilepsy and uses a lot of repetition, was well suited to helping Alexis overcome some TSC related cognitive challenges. She also talks about being bullied at school for her facial manifestations of TSC, for eating "weird food" and coming home "black and blue". Eventually, her mother felt it necessary to home school Alexis and her younger siblings. She narrates eloquently several aspects of her homeschooling experience that prepared her well for passing the necessary testing to enter college. She also highlights how TSC is managed in South Africa, the need for more awareness and access to better treatment. In her blog, "Living with TSC; Never a Dull Moment" she gives more personal glimpses of her challenges and joys and wants to continue to utilize her lived experience to raise awareness and connect with others living with TSC in her home country and worldwide. Her blog titled, "Living with TSC; Never a Dull Moment" can be found at http://theycallmetsc.blogspot.com/. Quoting her blog headline, "Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't have to be... This my story of hope". Powerful, inspiring words from this articulate, brave, humorous and caring young woman. Stay tuned for Part 2!

In Part 1 of this two-part episode, Alexis Minnaar, an English and Geography teacher from South Africa, and young adult living with Tuberous Sclerosis Complex shares the process of coming to terms with having TSC and learning how to manage the condition herself. When she left home and entered college, living away from home for the first time and studying and working, she describes feeling overwhelmed with this realization "like I got hit with a ton of bricks". Her system for tracking manageable variables in several different journals is really interesting and a positive outcome of struggling hard to accept the monumental challenges TSC case management can present. At a time when most young adults are exploring the freedoms of independence, Alexis had to learn to completely avoid caffeine closely monitor her diet, minimize any alcohol consumption, avoid overexertion during exercise and pay attention to her stress levels. Starting off in a Montessori school, she learned to read and write and from quite an early age. The Montessori system, developed by an Italian woman who's daughter had epilepsy and uses a lot of repetition, was well suited to helping Alexis overcome some TSC related cognitive challenges. She also talks about being bullied at school for her facial manifestations of TSC, for eating "weird food" and coming home "black and blue". Eventually, her mother felt it necessary to home school Alexis and her younger siblings. She narrates eloquently several aspects of her homeschooling experience that prepared her well for passing the necessary testing to enter college. She also highlights how TSC is managed in South Africa, the need for more awareness and access to better treatment. In her blog, "Living with TSC; Never a Dull Moment" she gives more personal glimpses of her challenges and joys and wants to continue to utilize her lived experience to raise awareness and connect with others living with TSC in her home country and worldwide. Her blog titled, "Living with TSC; Never a Dull Moment" can be found at http://theycallmetsc.blogspot.com/. Quoting her blog headline, "Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't have to be... This my story of hope". Powerful, inspiring words from this articulate, brave, humorous and caring young woman. Stay tuned for Part 2!

Max Piltz, brother of Nicky, the inspiration for Nicky's Gardens of Hope, gives his 2 cents on life with a nonverbal sibling who is significantly impacted by Tuberous Sclerosis Complex and Intellectual Disability. Max hits it home with his honest and matter of fact answers to questions posed by his mother, Adriana Piltz, Founder & CEO of Nicky's Gardens of Hope. You will be touched by this short episode highlighting sibling impact, resilience & teamwork. NGOH is a one of a kind, a revolutionary new program designed to meet the profoundly unmet need for a permanent home for IDD adults with wrap-around services, supporting the health, wellbeing & longevity of the IDD individual across a lifetime.

Max Piltz, brother of Nicky, the inspiration for Nicky's Gardens of Hope, gives his 2 cents on life with a nonverbal sibling who is significantly impacted by Tuberous Sclerosis Complex and Intellectual Disability. Max hits it home with his honest and matter of fact answers to questions posed by his mother, Adriana Piltz, Founder & CEO of Nicky's Gardens of Hope. You will be touched by this short episode highlighting sibling impact, resilience & teamwork. NGOH is a one of a kind, a revolutionary new program designed to meet the profoundly unmet need for a permanent home for IDD adults with wrap-around services, supporting the health, wellbeing & longevity of the IDD individual across a lifetime.

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold, primary physician,  autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. "If there's any communication, that has to go through me. Unfortunately, I have to network that system and that's just really cumbersome." "I can also help other people that have questions about how to transition. I'm certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better." "He's learning. Like I taught him to get his own meds, you know, it's kind of meeting each one of them where they are and what they can do. But it's hard." Throughout my 45-year career in health care, I’ve been attracted to boundaries, the cracks between those boundaries, and have found myself drawn to welcoming people as they cross the threshold between those boundaries and cracks. Healthcare professionals often refer to silos. The silo of cardiology, the silo of surgery – silos by specialties. Then the silos of setting – hospital, home, clinic, long term care, emergency care, intensive care. Then the silos of professions – doctors, surgeons, nurses, therapists, then “other” professionals – social workers, acupuncturists, chiropractors. So, you see where I’m coming from when I say boundaries and cracks. Well, I’m a fixer by nature.  Not the Michael Cohen variety of fixer but making it better. And the opportunity for better can be found at boundaries and cracks. These boundaries are never going away. It’s a product of specialization. To be an expert in something you need boundaries. “My specialty is within these boundaries.” Therefore, fixing can be found when we treat boundaries as thresholds and welcome people across thresholds. In my experience, one of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. So, welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I will interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world. My first interview of the series is with Jill Woodworth, a mother of four who has three children with Tuberous Sclerosis. Tuberous Sclerosis Complex or TSC is a genetic disorder that causes tumors to form in various organs, primarily the brain, eyes, heart, kidneys, skin and lungs. It’s also the leading genetic cause of both epilepsy and autism. I met Jill through her podcast, TSC Talks. I reached out to her and we set up a two-way interview. You can find Jill’s interview of me on her website. It’s Episode 28, Ripple. You can find these links in the show notes. Blog subscribers: If you don't see the podcast player, click here Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE   Episode Notes PREFER TO READ, HARD OF HEARING, OR DEAF? Find full transcript here Time-stamped sections Series introduction. 1 Podcast introduction 2:32. 2 Episode introduction 03:04. 2 Please contribute 04:01. 2 One Parent. Three Young Adults. 22 Years.  04:28. 2 Silos and boundaries 04:48. 3 Transitioning? The earlier the better 09:56. 4 Primary physician who knows you best? 12:52. 5 Autonomy. Meet them where they are 12:52. 6 Is there hope for the system? 18:01. 7 How do you find a minute? 20:06. 8

Bart Bruehler has learned about how God uses weakness through his son Pascal, who has Tuberous Sclerosis Complex.

Kari Luther Rosbeck spends most of her days fighting the Tuberous Sclerosis Complex -- the rare genetic disorder that is the leading genetic cause of both epilepsy and autism -- we were fortunate to get her on the show today to discuss some of the strategies her staff at the Tuberous Sclerosis Alliance employ in the struggle against this horrific illness. A common problem many organizations have is getting heard Through the Noise (ding ding ding) especially with the tremendous variety of illnesses and disorders that can affect infants and children, so raising awareness among pediatricians and so they'll be able to recognize the signs of TSC and treat them appropriately. The TSA has recently launched a new website to streamline their educational and outreach efforts and make the available research easier for professionals and the public to find. We also address the techniques for courting and closing major donors and sponsors so there are some useful takeaways for the members of your development team. 

In the Journal of Child Neurology's inaugural podcast, resident and fellow Alison Christy, MD, PhD, has a conversation with author Kandice Varcin, PhD, about her article "Visual Evoked Potentials as a Readout of Cortical Function in Infants With Tuberous Sclerosis Complex," in the February 2016 issue of the Journal of Child Neurology. The podcast also delves into retinoblastoma, balancing patient care and medical research, and a case report on Guillain-Barre syndrome and HLH. Articles discussed in this podcast: Visual Evoked Potentials as a Readout of Cortical Function in Infants With Tuberous Sclerosis Complex Retinoblastoma Epstein-Barr Virus-Associated Hemophagocytic Lymphohistiocytosis and Guillain-Barre Syndrome in a 16-Month-Old Child

Over a million people worldwide have Tuberous Sclerosis Complex. This alliance of organizations is looking to eradicate this disease. Lisa joined the TS Alliance in 2012 but her original introduction to the organization was in 2006 when her son was diagnosed with tuberous sclerosis complex (TSC). In her current role at the Tuberous Sclerosis Alliance she works closely with both private and corporate donors and she maintains her focus on helping the TSC community she is very much a part of by raising the funds to support research and programs for families and individuals with TSC. The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a genetic disorder that causes tumors to form in vital organs and is the leading known genetic cause for both epilepsy and autism."

Host: Michael Greenberg, MD First described in the 1880s, tuberous sclerosis complex, or TSC, is a genetic disease that affects multiple organs. It can cause tumors in the skin, kidneys, brain, heart, eyes, as well as other organ systems. Most patients who are mildly affected by TSC lead active and productive lives, but it is important to note that TSC is a life-long companion and patients are in need of receiving continuous follow-up care. Host Dr. Michael Greenberg welcomes Steven L. Roberds, PhD, Chief Scientific Officer of the Tuberous Sclerosis Alliance in Silver Spring, Maryland to discuss tuberous sclerosis complex. Download and listen today!

Background: Tuberous sclerosis complex (TSC) is a rare, multisystem, genetic disorder with an estimated prevalence between 1/6800 and 1/15000. Although recent years have seen huge progress in understanding the pathophysiology and in the management of TSC, several questions remain unanswered. A disease registry could be an effective tool to gain more insights into TSC and thus help in the development of improved management strategies. Methods: TuberOus SClerosis registry to increase disease Awareness (TOSCA) is a multicentre, international disease registry to assess manifestations, interventions, and outcomes in patients with TSC. Patients of any age diagnosed with TSC, having a documented visit for TSC within the preceding 12 months, or newly diagnosed individuals are eligible. Objectives include mapping the course of TSC manifestations and their effects on prognosis, identifying patients with rare symptoms and co-morbidities, recording interventions and their outcomes, contributing to creation of an evidence-base for disease assessment and therapy, informing further research on TSC, and evaluating the quality of life of patients with TSC. The registry includes a `core' section and subsections or `petals'. The `core' section is designed to record general information on patients' background collected at baseline and updated annually. Subsections will be developed over time to record additional data related to specific disease manifestations and will be updated annually. The registry aimed to enrol approximately 2000 patients from about 250 sites in 31 countries. The initial enrolment period was of 24 months. A follow-up observation period of up to 5 years is planned. Results: A pre-planned administrative analysis of `core' data from the first 100 patients was performed to evaluate the feasibility of the registry. Results showed a high degree of accuracy of the data collection procedure. Annual interim analyses are scheduled. Results of first interim analysis will be presented subsequent to data availability in 2014. Implications: The results of TOSCA will assist in filling the gaps in understanding the natural history of TSC and help in planning better management and surveillance strategies. This large-scale international registry to study TSC could serve as a model to encourage planning of similar registries for other rare diseases.