Podcasts about Ichthyosis

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“We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors.” - Skip Vilas In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb's early years, the evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare. Takeaways from Skip and Joyce: The Power of Advocacy: Joyce and Skip's relentless advocacy for Deb's health and well-being, challenging medical professionals when necessary. Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances. Resilience and Adaptation: Deb's strength and resilience in the face of social challenges and medical hurdles. Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches. “The advocacy role is important. And of course, that's one of the roles that Child Life has for children." - Skip Vilas Resources and Tips: Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more National Conferences by FIRST: Opportunities for families to connect and share experiences. Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you. Learn 6 Positions to Help Kids Feel Comfortable and Safe Here are some of our favorite affiliates that help promote positive coping for kids: 10% off Coping Kits and other select merchandise at Present Over Perfect Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Episode 010 | Sarah Asch, MD, FAAP, FAAD is a trailblazer in direct care pediatric dermatology. She's on a mission to expand high-quality pediatric dermatology care throughout underserved areas of the Upper Midwest and beyond. She LOVES her work in pediatric dermatology, and she wanted to love her job again. She decided to solve that problem by founding Hometown Pediatric Dermatology. Join us for the Part 1 of a wide ranging, provocative, educational, and fun conversation with a wildly talented doctor and delightful person. Part 2 will be out next Thursday.(This episode is marked as explicit. It's just one tiny BS. :)In this episode:

Welcome back to Skin Stories: A podcast by tbh Skincare with host Olivia Molly Rogers, where we explore with our guests what it's really like living with different skin conditions. In today's episode, Olivia will be interviewing author, speaker and appearance activist, Carly Findlay on her journey living with rare genetic skin condition, ichthyosis. Here Carly shares insights on self-acceptance, navigating societal expectations, and fostering a positive relationship with one's own body. You can view the episode transcript here. With thanks to our mental health charity partner, ⁠ReachOut Australia⁠⁠. ReachOut helps young people feel better about today and the future, no matter what challenge they are facing. To celebrate National Acne Positivity Day, $1 of every order placed on tbhskincare.com in the month of September will be donated to ReachOut. This podcast is brought to you by tbh Skincare - the patented treatment for breakouts, made for spotty hotties everywhere. Where to find tbh Skincare: tbhskincare.com, Priceline AU IG: @tbhskincare_ TT: @tbhskincare

Two of our dedicated PeDRA members, Amy Paller, MD and Andrea Rustad, a fourth-year medical student at Northwestern University Feinberg School of Medicine, recently published a children's book, Skin-Vincible, in collaboration with the Foundation for Ichthyosis & Related Skin Types. Through the experiences of its main character, Cece, this book addresses skin differences and how to cope with bullies. Watch and learn how this book was made and why it's an important tool for parents, teachers, and children in addressing bullying and differences. Click here to buy the book. To watch this interview on PeDRA's YouTube Channel, click here.

In part two of our Community Spotlight podcast featuring the Foundation for Ichthyosis and Related Skin Types (FIRST) you'll hear from the Cina Family as they discuss the important role patient advocacy organizations play in supporting families. Sean and Jolie Cina have two children with ichthyosis – Portia (16) and Miles (12), and found FIRST shortly after Portia was born and diagnosed. Now, 16 years later, the family is more involved than ever with the FIRST community. Inspired by her own condition, Portia created and produced a documentary about living with ichthyosis, called Beneath the Skin (you can watch this and other related videos on Portia's YouTube Channel here). Enjoy this episode as you learn more about ichthyosis and the Cina's experience with FIRST.

It's one thing to have a common disability that people are familiar with already. But what happens when you have something much lesser known? Is it harder to communicate your needs? In this episode, we chat to Carly Findlay all about her experience travelling with a visible skin disorder. From skin prep and packing all the meds to travelling in the Queensland heat.This week's episode features Carly Findlay, hosted by Karni Liddell and Oliver Hunter. A special thanks to the Queensland tour operators that made this experience possible: Emerald Resort Noosa, Ricky's River Bar & Restaurant, Noosa National Park, Habitat Noosa Everglades Eco Camp, Bang Bang Noosa, Eumundi Markets, Australia Zoo and Miss Moneypenny's Noosa.Accessed That is presented by Queensland.Read the episode transcript: https://www.dropbox.com/scl/fi/xbiiqploukdpwkiadrvr8/Episode-2-Final-Transcript.docx?rlkey=w4t1o4wla9g7e7ldr42rxmxv0&dl=0Discover more:Visit Queensland.com for our inclusive travel experiences and sign up for our mailing list: https://bit.ly/3Yvvb97 Learn more about Carly Findlay: @carlyfindlayFollow Queensland on Instagram: https://bit.ly/3q9qXYl Follow Queensland on Facebook: https://bit.ly/3rW1h1JFollow our producers, The Peers Project: https://bit.ly/TPPINSTA Hosted on Acast. See acast.com/privacy for more information.

La ictiosis es un conjunto de trastornos de la piel cuyos síntomas incluyen piel seca que pica y parece escamosa, áspera y roja. En la mayoría de las personas, es heredado uno o más genes con mutaciones de los padres. En este episodio hemos invitado a la Dra. María Laura Cossio.  La Dra. Cossio es Médico Cirujano Pontificia Universidad Católica de Chile. Ella realizó la residencia de Dermatología Pontificia Universidad Católica de Chile y la subespecialidad en Dermatología Pediátrica en CHU Sainte-Justine en la Universidad de Montréal, Canadá. Actualmente trabaja en el servicio de Dermatología Pediátrica en el Hospital Sótero del Río y Hospital Clínico Universidad Católica. Es Instructora de la Pontificia Universidad Católica de Chile, Director Médico de la Fundación API (Agrupación por la Ictiosis) y miembro Grupo de Estudio de Anomalías Vasculares (GEAV).    Fundación API: www.ictiosis.cl @fundacion.api    Asociacion Española de Ictiosis (ASIC) www.ictiosis.org @ictiosis_asic   Foundation for Ichthyosis and Related Skin Types (FIRST) www.firstskinfoundation.org @foundationforicthyosis   Ichthyosis Registry https://www.firstskinfoundation.org/ichthyosis-registry ichthyosisregistry@yale.edu    ¿Tienes algún comentario sobre este episodio o sugerencia de temas para un futuro podcast? Escríbenos a pediatrasenlinea@childrenscolorado.org

Join me as I delve deep into the world of ichthyosis, a complex skin disorder, with Dr. Keith Choate, Chair of Dermatology from Yale University. If you are someone living with this condition or simply want to learn more about fishscale skin disorder this conversation will be very insightful. We discuss early diagnosis, treatment options, groundbreaking genetic testing, and the emotional impact the skin condition can cause families. Connect with me across Social: Twitter: https://twitter.com/drhankopelman Instagram: https://www.instagram.com/doctor.han/ TikTok: https://www.tiktok.com/@drhankopelman Blog: https://www.hannahkopelman.com/blog/ To learn more about Ichthyosis: https://www.hannahkopelman.com/blog/understanding-ichthyosis/ The content of this podcast is for entertainment and educational purposes only. This content is not meant to be a substitute for medical advice or treatment for any medical condition. --- Send in a voice message: https://podcasters.spotify.com/pod/show/hannah-kopelman/message

Community Spotlight is back with new episodes and we're proud to be shining a light on the Foundation for Ichthyosis and Related Skin Types, more commonly known as FIRST! This incredible organization has been supporting patients, families, and caregivers, as well as funding research for more than 40 years. Listen to Chief Executive Officer, Chris Boynton as he shares his journey into rare disease advocacy, and highlights ways both patients, families, and investigators can become involved.

Carly Findlay is an appearance activist, author, and speaker, and one of the truest examples of someone living boldly and authentically as themselves. She chats to Chloe about dealing with ableism from within the disabled community, how she protects her peace, and the motto that helps her in life. CW: This episode contains discussions of ableism. If this episode raises any issues for you, help is available through Lifeline on 13 11 14 or via their website lifeline.org.au LINKS Follow Carly Findlay on Instagram, Twitter, Facebook, and YouTube. Learn more about Carly on her website https://carlyfindlay.com.au/. Buy Carly's books, Say Hello and Growing Up Disabled in Australia. Follow Chloé on Instagram, TikTok, Twitter, Facebook, and YouTube. Learn more about Chloé on her website https://www.chloehayden.com.au/. Follow Nova Podcasts on Instagram for videos from the podcast and behind the scenes content – @novapodcastsofficial. CREDITSHost: Chloe HaydenProducer: Amy KimballEditor: Adrian WaltonExecutive Producer: Anna HenvestManaging Producer: Elle Beattie Find more great podcasts like this at novapodcasts.com.au Nova Entertainment acknowledges the traditional custodians of the land on which we produced this podcast, the Gadigal People of the Eora Nation.See omnystudio.com/listener for privacy information.

* CONTENT WARNING: This episode mentions violence, online abuse, suicide, disability hate speech/hate crime * Carly Findlay is a writer, speaker, influencer and appearance activist, and someone who dedicates a lot of her time educating others on a number of disability-related issues. Carly was born with ichthyosis, a rare genetic disorder that affects the skin, eyes, ears, digestive system, temperature and metabolism. Living with ichthyosis comes with many challenges, however one that Carly unfortunately has to live with daily is the shocking bullying that she faces both in person and online. In today's episode, she generously shares some of her experiences and how she has dealt with the comments, stares, and unsolicited advice regularly given to her. Carly also educates us on how we can better approach the topic of disability and how we can be more inclusive as a society and in the media to make sure everyone is represented and treated fairly. She also gives some beautiful and helpful advice to anyone who may need a little reminder to feel comfortable and confident in their own skin, which is something we're extremely passionate about at Kic. Check out Carly's books ‘Say Hello' and ‘Growing Up Disabled in Australia'.See omnystudio.com/listener for privacy information.

Ever heard of Ichthyosis? Only about 100 people in the world have this particular diagnosis! Jennie sits down with us to discuss her daughter, Anna's, rare condition and what they've learned.  *These weekly interviews address a variety of topics ranging from OCD to eating disorders. The end goal of these chats is to bring important conversations to the table to help increase awareness, spread love, and encourage people feel less alone. *Interested in helping this project continue? Message, email, or join Patreon to be a part of the family.  TOWNSEND INFO: Spotify: https://open.spotify.com/show/1b4NMntfcyxfnOveFp8imK?si=fQj7iDS9TOegCm1MEP0esQ Website: https://www.townsendtmusic.com YouTube: https://m.youtube.com/channel/UCFyBoiYh1ePwhtD5BM4ZP8Q Facebook: https://m.facebook.com/townsendtmusic Patreon: https://www.patreon.com/TownsendTMusic Instagram: https://www.instagram.com/Townsendtmusic 

Dr. Steve Feldman on behavioral economics - Hormonal IUDs and androgenic skin conditions - Acquired ichthyosis review - Isotretinoin improves neuropsychiatric outcomes - Connect with us! Web: https://dermaspherepodcast.com/ Twitter: @DermaspherePC Instagram: @dermaspherepodcast Facebook: https://www.facebook.com/DermaspherePodcast/ Check out Luke and Michelle's other podcast, SkinCast! https://healthcare.utah.edu/dermatology/skincast/ Luke and Michelle report no significant conflicts of interest… BUT check out our friends at: Kikoxp.com (a social platform for doctors to share knowledge) https://www.levelex.com/games/top-derm (A free dermatology game to learn more dermatology!) The University of Utah Dermatology Echo: https://physicians.utah.edu/echo/dermatology-primarycare

In this episode of the podcast we interviewed Buffalo Noise Artist GodOfGaps . GodOfGaps is a local Buiffalo Noise project. Mark has been in a few band over the years including this one. He was ion a group called River of Ichthyosis and a hardcore band called Firebrand in the late 90's. It was a cool interview that Mark and Derek recently did and it was a good time. GodOfGaps is the first "Noise" artist that we've ever had on the podcast and tyhere are some more interesting ones in the area. For those wanting toi hear more. go see him livve or click on the link below! https://godofgaps.bandcamp.com/

In this episode of the podcast we interviewed Buffalo Noise Artist GodOfGaps . GodOfGaps is a local Buiffalo Noise project. Mark has been in a few band over the years including this one. He was ion a group called River of Ichthyosis and a hardcore band called Firebrand in the late 90's. It was a cool interview that Mark and Derek recently did and it was a good time. GodOfGaps is the first "Noise" artist that we've ever had on the podcast and tyhere are some more interesting ones in the area. For those wanting toi hear more. go see him livve or click on the link below! https://godofgaps.bandcamp.com/

There has been a stigma attached to skin conditions for centuries. Those who have skin conditions have not only to cope with the effects of their diagnosis but also the reaction of others to their condition. In this week's podcast episode, we will be talking about not just one, but three different dry skin conditions that affect millions of people's lives. Stephanie Shepherd of Cyapsoriasis: Stephanie is living with psoriasis for 14 years now. She runs an Instagram and a YouTube channel which both raise psoriasis awareness, through sharing her story and other people's too. She strongly believes in natural healing, through diet and lifestyle changes, because that's when she had seen the best results for her skin. Farah Khaleck is a motivational speaker and scleroderma ambassador. Farah was just 17 years old when she began experiencing symptoms and early signs of scleroderma. Since then, she has braved her situation to advocate and voice herself as a strong and empowered woman. Farah sees scleroderma as another challenge and has managed to live with it to her advantage. Carly Findlay OAM is an award-winning writer, speaker and appearance activist living with Ichthyosis. She works part-time at Melbourne Fringe as their Access and Inclusion Coordinator. She writes on disability issues for publications including ABC, Daily Life and SBS . Carly has written her first book – a memoir called Say Hello, and is editing Growing Up Disabled in Australia. Georgia Harris of Meadows on my Skin is a 25-year-old aspiring actor from Yorkshire. She frequently posts raw, intimate and vulnerable posts about life with Psoriasis and how to handle the mental health struggles that may come alongside it. Don't miss this episode as Stephanie, Farah, Carly and Georgia talk about living life with their dry skin condition and more. Learn about them here: Instagram: @cyapsoriasis Instagram: @farahkhaleck Instagram: @carlyfindlay Instagram: @meadowsonmyskin This episode is brought to you by Dermal Therapy. Their products are available Nationwide. Get 25% off the Winter Essentials range (which includes Very Dry Skin) up until the end of July 2022 at Amazon. Be sure to subscribe to the podcast! And follow us on Instagram @dermhealth.co or visit us online at https://www.dermhealth.co/ This podcast was published by Digital Health Co. --- Send in a voice message: https://anchor.fm/dermhealthco/message

Alan Mendelsohn, MD, Chief Medical Officer at Timber Pharmaceuticals, gives an update on their congenital ichthyosis clinical trial.Congenital ichthyosis is a rare genetic skin disorder characterized by dry, thickened, and scaling skin. Individuals with this condition may experience limited range in motion, chronic itching, an inability to sweat, and increased risk of infections. Currently, there is no approved targeted therapy for congenital ichthyosis. Symptom management for the condition is most often achieved with topical treatments (e.g., emollients, keratolytics, frequent baths, pumice stones) aimed at reducing the scaling and/or improving skin lubrication.As Dr. Mendelsohn explains, for many years it has been known that retinoid therapy could play a crucial role in the treatment of congenital ichthyosis. The issue with retinoid therapies, particularly oral options, is their high toxicity when taken long-term. Timber Pharmaceuticals, with this in mind, developed a retinoid therapy that could be applied topically to reduce toxicity and hopefully allow congenital ichthyosis patients to use the therapy long-term.The phase 2b CONTROL study was a randomized, double-blind, vehicle-controlled study designed to assess the efficacy and safety of two concentrations of TMB-001 (0.05% and 0.1% isotretinoin) for the treatment of two distinct subtypes of moderate-to-severe congenital ichthyosis (X-linked recessive and lamellar ichthyosis) in patients nine years old or older. Subjects applied TMB-001 twice daily for 12 weeks. The primary endpoint was the reduction of targeted ichthyosis severity, determined by a ≥50% reduction in the validated Visual Index for Ichthyosis Severity (VIIS) scaling score. Secondary endpoints included reduction in overall ichthyosis severity, as measured by a two-point improvement using the Investigator Global Assessment (IGA) scale. Topline results of this study showed reduction in targeted and overall severity of ichthyosis in patients in both treatment groups as measured by the VIIS scaling score and the IGA scale.As Dr. Mendelsohn mentions, Timber Pharmaceuticals is planning for an end-of-Phase 2 meeting with the FDA in the beginning of 2022 and expects to start the Phase 3 study of TMB-001 in Q2 2022.To learn more about congenital ichthyosis and other rare skin disorders, visit https://checkrare.com/diseases/skin-conditions/

Alan Mendelsohn, MD, Chief Medical Officer at Timber Pharmaceuticals, gives a detailed overview of congenital ichthyosis.As Dr. Mendelsohn explains, congenital ichthyosis is a rare genetic skin disorder characterized by dry, thickened, and scaling skin. Individuals with this condition may experience limited range in motion, chronic itching, an inability to sweat, and increased risk of infections. Congenital harlequin ichthyosis is a devastating subtype where skin over the entire body is thickened which can inhibit eating and breathing.Dr. Mendelsohn also notes that there is no approved targeted therapy for congenital ichthyosis. Symptom management for the condition is most often achieved with topical treatments (e.g., emollients, keratolytics, frequent baths, pumice stones) aimed at reducing the scaling and/or improving skin lubrication.To learn more about congenital ichthyosis and other rare skin disorders, visit https://checkrare.com/diseases/skin-conditions/

Wrapped in a white sheet was Nisha who suffers from Ichthyosis, a condition that causes her skin to be scaly and dry. As teenagers, we tend to worry about pimples, acne and facial hair growing in all the wrong places. But here is the story of a girl - different from you and me - that will warm your heart and make you think twice about the meaning of 'self-love'.  Watch Snippets of the most interesting clips https://www.instagram.com/tv/CLGlg21ATvR/?igshid=3w85i962494s

Abbie invites writer, activist, and advocate Carly Findlay on the pod to talk disability, ableism, tokenism, fashion, AND roller blading.  Topics such as suicide, disability discrimination, and ableism are mentioned in this episode. If this raises any issues, please visit Lifeline's website via this link https://www.lifeline.org.au/ or call 13 11 14. Send your Nightmare Fuel via voice note to hello@itsalotpodcast.com LINKS Carly Findlay on Instagram https://www.instagram.com/carlyfindlay/ Carly Findlay's book Say Hello https://bit.ly/3h61uHc Carly Findlay on ABC's You Can't Ask That https://ab.co/3DQyihn Lordy Dordie clothing brand https://bit.ly/3yKWcqD UNIQLO clothing brand https://bit.ly/3yPhvr4 Iris Apfel's Instagram account https://bit.ly/38FPec9 Stella Young's Ted Talk video https://bit.ly/3BHhPu3 Cliptomatic captioning software https://bit.ly/2WSKf5g Celeste Liddle on Twitter https://bit.ly/3BPDpwx Follow @itsalotpod on Instagram for videos, memes, and fun BTS stuff http://bit.ly/itsalot-instagram  If you're looking to buy Abbie's VUSH vibrator, visit https://bit.ly/3Dqq938 CREDITS Host:Abbie Chatfield Guest:Carly Findlay Executive Producer: Elise Cooper Producer and editor: Lem Zakharia See omnystudio.com/listener for privacy information.

Today in the fnd podcast we talk about stress impacts of stress and fnd and mental health. How fnd is not the cause of fnd but we shouldn't shy from addressing mental health in fnd as part of our treatment with fnd. It is certainly not all in our head it is not a mental disorder , it is neurological, however if we need to talk to someone why not.Follow Maggie on Instagram @ Maggie.chapmanthings to checkout:NAIDOC week! https://www.naidoc.org.au/NAIDOC Week celebrations are held across Australia each July to celebrate the history, culture and achievements of Aboriginal and Torres Strait Islander peoples. NAIDOC is celebrated not only in Indigenous communities, but by Australians from all walks of life. The week is a great opportunity to participate in a range of activities and to support your local Aboriginal and Torres Strait Islander community Mental  health and FND is so very important if you feel the need to talk about treatment about your health. Finding a medical professional that is familiar with fnd that you are comfortable with and treats fnd. Be an advocate for you. Always talk to your go or specialist. #havethechat#havethetalkStress and FND:Stress and life get in the way especially these times. Fnd especially it can essentially cause havoc. Fnd action have some suggestions to cope with stress with FND.https://www.fndaction.org.uk/stress-management/Now if you do decide to utilise the Mental health care plan here is the link I stress again fnd is not a Mental Disorder however this is information on the mental health care planhttps://www.servicesaustralia.gov.au/individuals/subjects/whats-covered-medicare/mental-health-care-and-medicareAmplifying Carly Findlay follow her on @carlyfindlay her website https://carlyfindlay.com.au/She is a speaker an activist a writer and has written numerous pieces including the latest book called “Growing up disabled" available now.  She is a blogger and is inspirational. She has a condition called Ichthyosis .Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix "ichthy" is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis. There is five books in the series all amazing check them out.Follow Maggie on Instagram @Maggie.Chapman and her creatively on @maggiesa.creativeTo listen to our song playlist  started by our lovely Maggie on Spotify click on the link belowhttps://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=IyN0V1ENQdi1_6W6MrNjAA HELPFUL RESOURCES:A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.https://www.neurosymptoms.org/Neurosymptoms has an app that you can download now too. Look up neurosymptoms or Jon stone and you will find it there. FND ORGANISATIONS:https://www.fndaus.org.au/FND AUSTRALIA SUPPORT  SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.https://fndaus.org.au/https://www.fndaction.org.uk/FND Dimensions aims to develop a network of ‘peer support groups' across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives  opportunity  for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.http://fnddimensions.org/A really helpful article and explanation of what FND is: 'https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQThe Fnd Podcast always suggests that you always talk with your gp and or specialist with any treatments in regards with FND.  

Sapo and Lorena are the loving parents of little Nauê. Nauê was born with Ichthyosis follicularis, alopecia, and photophobia AKA IFAP syndrome. An extremely rare condition with a shortened life expectancy. Caring for a chronically ill child can be draining. But Sapo and Lorena have found a way of coping with the stress and connecting to their roots. Capoeira, a playful mix of martial arts and dance from their homeland, which they have immersed their son into to encourage play, love and courage.

Sapo and Lorena are the loving parents of little Nauê. Nauê was born with Ichthyosis follicularis, alopecia, and photophobia AKA IFAP syndrome. An extremely rare condition with a shortened life expectancy. Caring for a chronically ill child can be draining. But Sapo and Lorena have found a way of coping with the stress and connecting to their roots. Capoeira, a playful mix of martial arts and dance from their homeland, which they have immersed their son into to encourage play, love and courage.

Carly Findlay is #1 on our list of our highest rating non-fiction interviews in 2020. CarlyFindlay is an award winning writer, speaker and appearance activist. She is the author of the memoir Say Hello, and has been published in The Guardian, The Age, The Sydney Morning Herald, Daily Life, SBS and Frankie. In 2020 Carly is editing the anthology Growing Up Disabled in Australia. In 2020 Carly was awarded an Order of Australia (OAM) for services to people with a disability, and in 2014 she was named as one of Australia's most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards. She has appeared on ABC's You Can't Ask That and Cyber Hate with Tara Moss, and has been a regular on various ABC radio programs. She organised history making Access to Fashion - a Melbourne Fashion Week event featuring disabled models. Carly identifies as a proud disabled woman - she lives with a rare severe skin condition - Ichthyosis. Growing Up Disabled in Australia is part of a series. You can listen to previous episodes on The Garret about the series, including Ben Law discussing Growing Up Queer in Australia and Maxine Beneba Clarke, Magan Magan and Shantell Wetherall discussing Growing Up African in Australia. About The Garret Read transcript of this interview at thegarretpodcast.com. You can also follow The Garret on Twitter and Facebook, or follow our host Astrid Edwards on Twitter or Instagram. See omnystudio.com/listener for privacy information.

Jennie Riley, founder of Hope for Anna and Harlequin Divas, joins the 1 Girl Revolution podcast this week to share her own life story, she talks about harlequin ichthyosis and her family’s own journey with it through her daughter Anna, how the Hope for Anna Facebook page started and what led her to start Harlequin Divas, what she’s doing to raise awareness and to help others with harlequin ichthyosis, and so much more. You don’t want to miss this inspiring episode! http://1girlrevolution.com/jennieandanna/ 

"I had to keep that really secret." Carly Findlay is a blogger, writer, speaker and appearance activist who lives with a skin condition called Ichthyosis. In this episode you'll discover what it's like growing up looking different, what some of her biggest challenges are as a result of her condition and about her amazing project" Growing Up Disabled in Australia".

Carly Findlay is an award winning writer, speaker and appearance activist. She is the author of the memoir Say Hello, and has been published in The Guardian, The Age, The Sydney Morning Herald, Daily Life, SBS and Frankie. In 2020 Carly is editing the anthology Growing Up Disabled in Australia. In 2020 Carly was awarded an Order of Australia (OAM) for services to people with a disability, and in 2014 she was named as one of Australia's most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards. She has appeared on ABC's You Can't Ask That and Cyber Hate with Tara Moss, and has been a regular on various ABC radio programs. She organised history making Access to Fashion - a Melbourne Fashion Week event featuring disabled models. Carly identifies as a proud disabled woman - she lives with a rare severe skin condition - Ichthyosis. Growing Up Disabled in Australia is part of a series. You can listen to previous episodes on The Garret about the series, including Ben Law discussing Growing Up Queer in Australia and Maxine Beneba Clarke, Magan Magan and Shantell Wetherall discussing Growing Up African in Australia. About The Garret Read transcript of this interview at thegarretpodcast.com. You can also follow The Garret on Twitter and Facebook, or follow our host Astrid Edwards on Twitter or Instagram. See omnystudio.com/listener for privacy information.

Carly Findlay is a writer, podcaster and activist. She’s written a memoir before hitting forty, but she’s got a lot to say. It’s a book for those who are disabled, and those who are not. It’s an attempt to get people to understand words like “micro aggression” and what it means to be subjected to them, day in and day out. But it’s also a manifesto on difference and self-love. Carly talks about growing up with Ichthyosis and explains how parents can help their children understand facial difference. Say Hello is available now, and you can find Carly on Instagram @carlyfindlay and you can support her work through her website. Growing up Disabled in Australia is due out in April 2020 through Black Inc Books.

An inspiring interview to celebrate International Women's Day. Mui Thomas joins us to talk about refereeing and Harlequin IIchthyosis

An inspiring interview to celebrate International Women's Day. Mui Thomas joins us to talk about refereeing and Harlequin IIchthyosis Support this podcast

If people stop you in the street, what’s the first thing they say to you? "Hello!"? Or "How are you?" For author and journalist Carly Findlay her experience is very different. Carly was born with a rare genetic skin disorder called Ichthyosis, which affects approximately one in 200,000 newborns.  Ichthyosis causes the skin to build up and scale and when people see Carly they often ask what happened to her.  Did she get burnt?  Has she had microdermabrasion? They often think by asking, they're being kind.  But in her memoir Say Hello, she points out that despite people's best intentions that's how it feels... Click here to subscribe to No Filter. CREDITS: Host: Mia Freedman  With thanks to special guest Carly Findlay: https://carlyfindlay.com.au/  Buy her memoir, Say Hello, here: https://www.booktopia.com.au/say-hello-carly-findlay/prod9781460755037.html  Follow her on Instagram here: https://www.instagram.com/carlyfindlay/?hl=en  Producer: Elissa Ratliff GET IN TOUCH: Call the PodPhone on 02 8999 9386. Email the show at podcast@mamamia.com.au Find any book mentioned at apple.co/mamamia No Filter is a podcast by Mamamia. Find more shows here.   See omnystudio.com/listener for privacy information.

If people stop you in the street, what’s the first thing they say to you? "Hello!"? Or "How are you?" For author and journalist Carly Findlay her experience is very different. Carly was born with a rare genetic skin disorder called Ichthyosis, which affects approximately one in 200,000 newborns.  Ichthyosis causes the skin to build up and scale and when people see Carly they often ask what happened to her.  Did she get burnt?  Has she had microdermabrasion? They often think by asking, they're being kind.  But in her memoir Say Hello, she points out that despite people's best intentions that's how it feels... Click here to subscribe to No Filter. CREDITS: Host: Mia Freedman  With thanks to special guest Carly Findlay: https://carlyfindlay.com.au/  Buy her memoir, Say Hello, here: https://www.booktopia.com.au/say-hello-carly-findlay/prod9781460755037.html  Follow her on Instagram here: https://www.instagram.com/carlyfindlay/?hl=en  Producer: Elissa Ratliff GET IN TOUCH: Call the PodPhone on 02 8999 9386. Email the show at podcast@mamamia.com.au Find any book mentioned at apple.co/mamamia No Filter is a podcast by Mamamia. Find more shows here.   See omnystudio.com/listener for privacy information.

If people stop you in the street, what’s the first thing they say to you? "Hello!"? Or "How are you?" For author and journalist Carly Findlay her experience is very different. Carly was born with a rare genetic skin disorder called Ichthyosis, which affects approximately one in 200,000 newborns.  Ichthyosis causes the skin to build up and scale and when people see Carly they often ask what happened to her.  Did she get burnt?  Has she had microdermabrasion? They often think by asking, they're being kind.  But in her memoir Say Hello, she points out that despite people's best intentions that's how it feels... Click here to subscribe to No Filter. CREDITS: Host: Mia Freedman  With thanks to special guest Carly Findlay: https://carlyfindlay.com.au/  Buy her memoir, Say Hello, here: https://www.booktopia.com.au/say-hello-carly-findlay/prod9781460755037.html  Follow her on Instagram here: https://www.instagram.com/carlyfindlay/?hl=en  Producer: Elissa Ratliff GET IN TOUCH: Call the PodPhone on 02 8999 9386. Email the show at podcast@mamamia.com.au Find any book mentioned at apple.co/mamamia No Filter is a podcast by Mamamia. Find more shows here.   See omnystudio.com/listener for privacy information.

Tuesday Breakfast 19 Feb 2019 7.00 am Acknowledgement of Country 7.02 am  News HeadlinesMedevacRoyal Commission into institutional abuse in the disability sector Townsville Deaths in custodyOchre Ribbon week7.10 am  Medevac Bill - what it is, isn't and the LIEs the govt is trying to spread. Joyce Chia from the Refugee Council explains the bill and what it would mean for asylum seekers.7.30 am Madison Griffiths is a producer, a writer who has had work published in the Guardian, VICE, Sydney Morning Herald and SBS, the online editor of Voiceworks Magazine and most recently, the creator and presenter of the podcast Tender. Madison joins us to discuss the process of creating Tender - a podcast about what happens when a woman leaves an abusive relationship.  7.45 Alternative News: Ilhan Omar and the AIPAC (The American Israel Public Affairs Committee) backlash7.55 am Annette Brownlie, chairperson of Independent and Peaceful Australia Network, discusses the developments in Venezuela and explains why military intervention isnt the answer.  8.10 am Carly Findlay is an award‐winning writer, speaker and appearance activist.  She identifies as a proud disabled woman — she lives with a rare severe skin condition called Ichthyosis. She joins us in the studio to discuss her new memoir and manifesto, Say Hello.    Songssong:  Queen with Colourartist:  P-UniQuesong: Madartist:  Solange ft Lil Wayne

Dr. Stacey Shillington's 7-Week Clear Skin Program https://www.learntruehealth.com/clearskin LearnTrueHealth.com/clearskin 8-Week Anti-Aging Skin Program https://www.learntruehealth.com/youngerskin LearnTrueHealth.com/youngerskin   One-on-One Coaching with Dr. Stacey https://naturopathicbeau.kartra.com/page/ZQE22   Holistic Dermatology https://www.learntruehealth.com/holistic-dermatology Many of you may have heard of Holistic Dermatology, and some of you may have not. Holistic Dermatology indeed exists. And it’s all about healing your skin with Naturopathic Medicine. To explain how Holistic Dermatology works, join me and my guest, Dr. Stacey Shillington in this episode. Acne Struggles Dr. Stacey Shillington grew up in Alberta in the 80s and dealt with acne. At the time, she had no idea what Naturopathic Medicine or Holistic Dermatology was. As a teenager, she tried topical creams, and her doctor even put her on the birth control pill to control her acne. For a few years, everything was fine. But in her late 20s, Dr. Stacey Shillington wanted to go off birth control. She got into yoga to get into her body and get interested in health. Eventually, Dr. Stacey Shillington decided to get off the birth control pill. As a result, her skin completely flared up. She recalls being in Asia at the time traveling the world. When this happened, it changed Dr. Stacey Shillington’s personality. She was outgoing before the flare up and turned to hide away from the world. Dr. Stacey Shillington was shocked at how much her acne changed her personality. Then when she went back to Toronto, Dr. Stacey Shillington couldn’t face going back to her old job nor meet her friends. “Doctors suggested many things. Looking back, I’m surprised I didn’t go for those options because I was so desperate. But something inside me said that wasn’t the solution,” recalls Dr. Stacey Shillington.  She adds, “I spent a ton of money trying everything out there. So, I spent all my time researching skin care. Not much made my skin better. I was married when I went off the birth control pill, and my skin flared up. Then I ended up getting divorced.”   Seeking Natural Remedies Somebody then suggested to Dr. Stacey Shillington to see a Naturopathic Doctor. The Naturopathic Doctor wasn’t able to completely clear her skin, but the doctor really changed Dr. Stacey Shillington’s philosophy on health care and eventually fast-tracked her journey to learn about Holistic Dermatology. “She said my skin is like this because there is an imbalance in my body. And the way to heal your skin is to balance your body and find the root cause of your acne,” shares Dr. Stacey Shillington. “So, I went back to school to become a Naturopathic Doctor, so I could learn how to do this.” Realizations Dr. Stacey Shillington realized acne and skin care problems are debilitating to people. They affect our quality of life. And the solutions out there are not solving the problem. There’s a huge void. So that is what inspired Dr. Stacey Shillington to go back to school and learn all about Holistic Dermatology. “My whole career as a Naturopath has been focused on treating the skin, learning how to heal the skin, really helping people get their lives back and living their lives fully,” Dr. Stacey Shillington said. More To Learn A year after graduation, Dr. Stacey Shillington started working in a dermatology clinic in Toronto. She worked there for about 11 years. Time and work allowed her to become proficient in her career. “When I was a Naturopathic Doctor studying, they always said the gut and the skin are intimately related. And it’s true. Your skin is often a reflection of what’s going on in your gut,” said Dr. Stacey Shillington. Dr. Stacey Shillington also said that there are tons of research in the last 6 to 10 years about the microbiome. There are a hundred trillion microbes that live in our gut and on our skin. And when there’s an imbalance in the microbiome in the gut, eventually that imbalance is going to present itself on the skin. Right Diet According to Dr. Stacey Shillington, changing your diet and eating foods that are less inflammatory is essential. This is to heal your skin and to reduce inflammation in the gut. Healing gut is critical to improving your skin. “You can be eating the very best diet, but if your gut is in trouble if you have an overgrowth of certain pathogens, that has to be addressed as well in addition to changing the diet. This is to heal the skin fully,” Dr. Stacey Shillington advises.  She adds, “I get my patients into an anti-inflammatory diet. There are certain foods out there that cause inflammation more than other foods. Dairy is a very inflammatory food especially for people who have acne.” Recommended Foods Sugar is a drug in itself. And Dr. Stacey Shillington says it impairs insulin sensitivity. It leads to high androgens and again points to acne. High sugar fruits, maple syrup, and honey also have the same effect. “It’s not that you can never eat these foods again. But you cannot eat these foods while you are healing the gut and reducing inflammation in the body,” said Dr. Stacey Shillington. Dr. Stacey Shillington on the contrary, reveals that berries are amazing for acne patients. It is because berries reduce inflammation and have a low glycemic index. They’re not likely going to spike insulin levels.  “I also love cruciferous vegetables. Broccoli, arugula, cauliflower, and brussels sprouts detoxify the liver. Food is a fantastic medicine, and it can help the body function so much more efficiently. It sets the stage for diving in to start healing the skin,” Dr. Stacey Shillington said.   Other Foods To Avoid Dr. Stacey Shillington shares that doctors at the turn of the century used to call acne diabetes of the skin. So, treating acne as a metabolic condition is often one of the keys to solving it. “I love berberine. It is amazing for acne. Not only does it help regulate the blood sugar, but it also helps support the liver, and it is also anti-microbial. So, it helps solve any dysbiosis in the gut,” Dr. Stacey Shillington said. According to Dr. Stacey Shillington, chocolate is so inflammatory for people with skin problems because it contains theobromine. She says there was a May 2014 study where it showed that theobromine could increase acne. Thus, dairy, sugar, and chocolate are the foods that should be looked at if you have inflammatory skin disorders. The other food as well that many people find surprising is oatmeal. Dr. Stacey Shillington says oatmeal contains an element that decreases sex hormones binding globulin in the blood. “And when you have decreased levels of it, you have more testosterone in the blood. Testosterone is an androgen and contributes to the production of acne,” explains Dr. Stacey Shillington. To get started, Dr. Stacey Shillington recommends that for three days, eat vegetables, low glycemic index fruits, lean proteins and see how you feel. If you feel better than you did when eating grains, that is a sign that you need to spend some time not eating grains while you are healing and balancing your body. “And I’m not saying forever because some starchy carbs are essential. Gluten is also so inflammatory. I can’t heal skin when people are eating gluten,” said Dr. Stacey Shillington. Recommended Oils Dr. Stacey Shillington said when there are too many omega-6 fatty acids in the body, it’s highly inflammatory. It is found in soybean oil, canola oil, sunflower oil, peanut oil, corn oil, a lot of other veggie oils. Instead, focus on oils like olive oil which has omega-9 fatty acids, avocado oil, and coconut oil which is saturated fat. Also eat foods that are high in omega-3 fatty acids like salmon, mackerel, sardines, organic eggs, chia seeds, hemp seeds, and flax seeds. Dr. Stacey Shillington also advises to be aware of the oils we are using so we can reduce inflammation. “Olive oil should be used raw. When it’s heated up at a certain temp, it starts to oxidize. That will create inflammation. So, cook with avocado or coconut oil. Fish oils can be beneficial, and it can make a difference on the skin,” Dr. Stacey Shillington said.  She adds, “But for acne, I would never recommend fish oils. It’s one of the supplements that will contribute to acne. It’s much better to address other skin conditions like psoriasis.” Dr. Stacey Shillington also mentions that every single cell of our body is composed of fatty acids. So, to have a healthy body, we have to make sure those cell membranes are indeed nourished. “There’s a moisture barrier on the skin, and it looks like a brick wall. If the fatty acids are deficient, that brick wall is going to start to break down,” said Dr. Stacey Shillington. “And things that are not supposed to get into the body are going to get into the body and vice versa. So, it’s important to keep that moisture barrier intact to half healthy skin.” Genes We all manifest imbalances differently. Dr. Stacey Shillington says it’s based on our genes. But 90% of our health is determined by our lifestyle. Diet, sleep, and stress can also improve or worsen our skin condition. “When you’re stressed and prone to acne, three different biochemical pathways that are activated in the body that contribute to acne,” said Dr. Stacey Shillington.  She adds, “Exercise is also an important thing. Mindset is also huge. Positive mindset creates resilience against stress.” Contributing Factors How much sunlight, regular eating, sleeping, and wake times are also factors that contribute to healthy skin. Dr. Stacey Shillington also says relationships and resentments play a significant role as well. Our emotions also play a significant role in good skin health. Meditation is essential, and Dr. Stacey Shillington says skin health is better when people practice self-love. You need to be relaxed for your body to heal.  “Make sure your liver is supported, do detoxes and work on your gut. Try to work on your gut before you get off birth control pills. You want to be balanced as possible,” advises Dr. Stacey Shillington.  She adds, “When you’re on birth control, you’re not making any natural estrogen or progesterone. It’s shutting down your natural hormone production. And it’s also suppressing androgens which are the hormones that are going to cause acne.”  Effective Cleanse Dr. Stacey Shillington recommends Manuka honey to cleanse. She also said that if you don’t have a microbiome that disrupted, you can use oil to cleanse, which is very beautiful and nourishing. “If you do have a microbiome imbalance, which will result in fungal acne, use something like micellar water. Cleansing should be incredibly gentle. For moisture, use aloe vera gel or jojoba,” Dr. Stacey Shillington advises.  She adds, “In the palm of your hand, put about a teaspoon of aloe vera gel and a teaspoon of the oil of your choice. Mix it vigorously with a finger for 30 seconds until it turns into a lotion. Apply to face and add essential oils if you like.” Skin Care Classes Dr. Stacey Shillington has some amazing classes that will teach you how to take care of your skin. Topping off the list is her 7-week Clear Skin Program which you can also sign up via my link www.learntruehealth.com/clearskin.  There’s a new module each week, and the lessons are simple yet effective. Another excellent program is Dr. Stacey Shillington’s 8-Week Anti-Aging Skin Care Program. Like the 7-week program, it’s very holistic and effective as well so make sure to check it out on her website. “I want to change the way the skin is approached. My experience and the treatments available right now are just not helping people and often making skin situations even worse. My mission is to help change that. Get some real healing going on with our skin,” said Dr. Stacey Shillington.  Bio Dr. Stacey Shillington has been practicing Naturopathic Medicine in Toronto for over twelve years with some of the city’s top dermatologists. Inspired by her skin struggles, her specialty has always been healing the skin from the inside out. In addition to her private practice in Toronto, she owns Naturopathic Beauty and runs successful online acne and anti-programs.  Dr. Stacey Shillington is also a mother to 2 boys and a dedicated yogi and meditator. She graduated from McGill University with a BComm in 1995 and the Canadian College of Naturopathic Medicine in 2006.  Get Connected to Dr. Stacey Shillington! Official Website Facebook Instagram YouTube Recommended Reading:  Renegade Beauty – Nadine Artemis      Song: Nekzlo - Moments (Vlog No Copyright Music) Music promoted by Vlog No Copyright Music. Video Link: https://youtu.be/TCFMO24whuM

Award-winning writer, appearance activist and now author - these are just a few of Carly Findlay's achievements and it was amazing to sit down with her to discuss her new memoir Say Hello. Carly was named as one of Australia's most influential woman in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards. She writes on disability and appearance issues for the ABC, SBS and Daily Life. She identifies as a proud disabled woman living with a rare severe skin condition known as Ichthyosis. We talk with Carly about her new memoir, fashion, blogging and her writing process. Books mentioned in this podcast: Say Hello by Carly Findlay —> https://bit.ly/2Meyhta Growing Up African in Australia by Maxine Beneba Clarke —> https://bit.ly/2DgivLv Hosts: John Purcell and Sarah McDuling Guest: Carly Findlay

“You're not like, you know, a REGULAR disability.” Carly Findlay fields all kinds of ridiculous comments about her appearance and her disability, ranging from the insensitive to the abusive. Some of them have taken her all the way to the Human Rights Commission. “It was a bit weird to be the top news story for a couple of days … It wasn't a good experience.” Carly lives with Ichthyosis – a rare, severe skin condition – and is an appearance activist. She is also a writer whose work has been published by the Guardian, Daily Life, ABC, Mamamia and Frankie magazine. On her award-winning blog Tune Into Radio Carly, she writes honestly about life with Ichthyosis, disability, and visible difference. Carly talks to me about her work, but also we giggle a lot about pop music from the late 90s. If 2016 has gotten you down, Carly Findlay is a delightful guest to spend an hour in conversation with. [Note from September 2018: I've had to re-upload this episode, and since its first release two years ago Carly has only gone on to do more and more amazing things. Check out her website http://carlyfindlay.com.au] Links from this episode: Carly's blog: http://carlyfindlay.blogspot.com.au [Now moved to http://carlyfindlay.com.au] Carly's Facebook page: http://fb.com/Tune.Into.Radio.Carly/ Jill Starks' SMH profile on Carly Findlay and other Australian disability activists (and Carly's DRESS): http://www.smh.com.au/national/disability-advocates-demand-an-end-to-slacktivism-and-inspiration-porn-20160109-gm2dw9.html 'Living the unexpected. Marriage (and maybe babies)': http://carlyfindlay.blogspot.com.au/2014/11/living-unexpected-marriage-and-maybe.html Carly's protest of Me Before You - 'Having a disability is not a tragedy' (SBS): http://www.sbs.com.au/topics/life/culture/article/2016/06/17/having-disability-not-tragedy 'Carly Findlay suffers skin condition, wins internet after copping abuse on internet site Reddit': http://www.news.com.au/technology/online/carly-findlay-suffers-skin-condition-wins-internet-after-copping-abuse-on-internet-site-reddit/story-fnjwnhzf-1226787312639 'Disability activist and blogger Carly Findlay combats pity, sensationalism with her own story': http://www.abc.net.au/news/2013-12-03/disability-blogger-takes-control-of-her-story/5126834 Savage Garden bot: http://twitter.com/affirmation_sg The music you heard in this episode: 'Sleepless' by Anna O 'Savage Garden – Break Me Shake Me (ChristmatiK Remix)' by ChrismatiK 'Silver Magic Ships' by Marksman Lloyd If you'd like to keep Just A Spoonful going, become a Patron of Kaitlyn's! http://patreon.com/kplyley Podcast artwork by Brisbane artist Erin Michelle

Tuesday Breakfast April 10th7.00am  Acknowledgement of Country7.05am News of the Week7.15am  George speaks to Carly Findlay  an award winning writer, speaker and appearance activist. Carly has the rare, severe skin condition called Ichthyosis. She writes on disability issues for publications including the ABC, Daily Life and SBS. She joins us on the line to discuss the ways people living with disabilities can be mistreated, othered and dehumanised and what can be done to fix it.7.30am Ayaan and Lauren chat to Ahmed Hassan, the Founder and Director of Youth Activating Youth, an organisation that helps disadvantaged multicultural young people navigate their way through life. He joins us to talk about about the recent uproar concerning alleged police brutality in Victoria.7.45am Community Announcements 8.00am Dr Chris Bourke, Strategic Program Director of Australian Healthcare & Hospitals Association and Lauren discuss why cultural safety is important in Aboriginal and Torres Strait Islander healthcare.8.20am We cross live to Nish Morris, activist and writer based in Naarm, Phillip Marri from WAR, and Kroft, form 3CR’s Global Intifada, to hear live updates from Brisbane at the Stolenwealth Games.Musicartist: DRMNGNOWsong: Australia Does Not Exist artist: Lamine Sonko & The African Intelligence song: Mama Africaartist: Nai Palmsong: Cross Fire/ So Into You 

Recently I invited the Bridechilla community to share how health has factored into wedding planning decisions. We had a wonderful response that really showed how little we talk about these issues. This episode's guest is writer, appearance activist and Bridechilla Graduate, Carly Findlay. She challenges people's thinking about what it's like to have a visibly different appearance and is a wealth of information particularly from her perspective, living with the skin condition, Ichthyosis. Be on your way to wedding Planning Zen with the Bridechilla Guides! Visit the Bridechilla Store and use the Codeword LISTEN for 10% off your order! Join the Bridechilla Community on Facebook. The best Wedding Planning community around. It's bullshit-free, jerk-free and a nice place to be! Keep up to date with the Bridechilla Blog, read podcast show notes and be inspired by real Bridechilla Weddings Join Bridechilla founder, Aleisha on Instagram, for wedding inspiration and more!

Brenna was born with Harlequin Ichthyosis, a rare skin condition that requires constant care. Her condition teaches that beauty is more than what you see.

This week's episode is a supercut, a compilation, a best of, a mix tape! It features some of the best moments of the show over the last year or two that share the theme of overcoming adversity.We start with the Hon. Leeanne Enoch, Minister for Innovation, Science and the Digital Economy and Minister for Small Business in the seat of Algester in Queensland. Leeanne is the first Aboriginal Australian Woman to be elected into the Qld Parliament, a woman who grew up On Country in North Stradbroke Island and then in Woodridge housing commission on the southern fringes of Brisbane. She shares here how, as a kid, she made sense of her relatively low socioeconomic circumstances.We then move on to Deng Adut. In his recent book “Songs of a War Boy” Deng describes in chilling detail the life of a child soldier - which includes horrific first hand accounts of battle, torture, death, and the kind of barbaric brutality that only humans inflict on other humans. When he was twelve, he was rescued by his older brother and smuggled out of Sudan into Kenya where he met an Australian couple that helped him and his brother come here to start a new life - and that new life is what we talk about here.Carly Findlay is next; Carly is an appearance activist, blogger, and writer who was born with Ichthyosis. This basically causes her skin to renew itself at an incredibly fast rate, leaving her susceptible to dryness, inflammation, itchiness, and gives her a noticeably red complexion - which is also shiny because she has to constantly apply paraffin to her skin so as to alleviate the pain and discomfort.We then hear from Lola Berry, a nutritionist, author, blogger, speaker and advocate for happiness. She even wrote a book about happiness. She's a woman who has inspired hundreds of thousands of people all around the world to be kinder and more caring to themselves through food and nourishment - not just of their bodies but of themselves as a whole. A trigger warning at the top here. Sexual assault is a part of Lola's story and she talks about that today.I hope you get some value out of this special episode, dedicated to the challenge of overcoming adversity. See acast.com/privacy for privacy and opt-out information.

Carly is a writer, speaker and appearance activist. She challenges people's thinking about what it's like to have a visibly different appearance. Carly has written for many publications including The Guardian, Daily Life, The ABC, Mamamia, Frankie magazine and SBS. She has used her blog to write about her skin condition, Ichthyosis, as well as to promote causes such as Love Your Sister and Donate Life. Carly received the 2010 and 2013 Yooralla Media Awards for Best Online Commentary for her body of disability focused writing (she declined 2014's award due to ethical reasons). She won the best personal blog category for Kidspot Voices of 2013, and the 2013 BUPA Health Activist award for Positive Life Change, and she was also a finalist in the Best Australian Blogs competition in 2011, 2012 and 2014. Carly was named as one of Australia's most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards. Most recently, Carly received a diversity award from the Australian Centre for Leadership for Women for organising Australia's first Ichthyosis meet. She is also the cohost of the podcast, Refreshments Provided. You can connect with Carly at http://carlyfindlay.blogspot.com/ and/or http://www.facebook.com/tune.into.radio.Carly

Final episode of 2016 before we have a summer break. In this episode I'll revisit some of our interviews, sharing bonus content from Sam Drummond who is short statured, Carly Findlay who has Ichthyosis and Jonathan Brown who has anxiety. There's also a few pieces about Jenny your host that were going to be the first episode but were filed away for later instead. Listen to the end, there's a blooper of course. If you'd like to get in touch, you can email fullysickpodcast@gmail.com or find us on Twitter and Facebook. Music is from freemusicarchive.org with thanks to Dave Depper for all music beds. Episode produced by Jenny O'Keefe. This podcast was edited on the lands of the Dja Dja Wurrung People. We pay our utmost respect to those People and their Elders, past and present.

@carlyfindlay (Carly Findlay) Award winning writer, speaker, appearance activist, cook, disability advocate, music lover, Ichthyosis, opinions my own. Carly's getting married Inspiration porn and New Idea "You have hair there?" Rosie's nude pic Misused photos and Reddit

Episode #12 Courtney is the mom to Connor and Brenna. Brenna has a rare skin disorder called Harlequin Ichthyosis. Courtney shares her story of Brenna's birth, diagnosis, and the ins and outs of Brenna's condition. We chat about balancing special needs with regular needs, celebrating beauty and how to respectfully approach a stranger who is different. Because of Brenna's condition her skin appears red and dry - kind of like she has a really bad sunburn. She has to stay lathered in Aquaphor to keep her skin moist. Brenna's different appearance attracts a lot of attention. After nearly four years of being Brenna's mom, Courtney has learned some valuable lessons about how to best approach those with differences. If you've ever wondered what to do when your young child loudly comments on someone who is different, this episode is for you! Learn more about Harlequin Ichthyosis Follow Courtney's blog, Blessed By Brenna Follow Courtney on facebook or instagram Music for today’s episode from Bensound | Kevin MacLeod 

Veterinary Pathology podcast editor Leah Schutt discusses the the article, "Autosomal Recessive Congenital Ichthyosis in American Bulldogs Is Associated With NIPAL4 (ICHTHYIN) Deficiency" with Dr. Mauldin and Dr. Casal, two of the authors of the study. To view this article, click here.

In this lecture at the SDPA summer conference in Las Vegas, Dr. Amy Paller taught about atopic dermatitis and ichthyosis, including eczema therapy and steriod addiction.