Podcasts about healthevoices

In this episode, I'm attending the healtheVoices conference hosted by Johnson and Johnson, and get to speak with three amazing VIPs to learn what it takes to be successful when working blind! I sit down with Jill King, a "baby blind" VIP who talks about creating a nonprofit aimed at helping disabled students get the services they require, Amir Rahimi, A new member of the Johnson and Johnson team who has one of the craziest vision stories I've ever heard, and Joe Strechay, a film and television producer who almost gave me my big break in TV! 

In episode 4, the HealtheVoices Radio co-hosts (Robert Breining, Brady Dale Etzkorn-Morris and Dawn Gibson) will take a look back at Season 3 of the show and reflect and learn from the challenging year since the start of the pandemic. The co-hosts will dive deeper into the topics discussed on this season episode-by-episode, allowing them to reflect on those moments and conversations, and share how their own 2020 experiences have shaped their outlooks on advocacy and life with chronic illness.   The views and opinions expressed by the podcast hosts are solely those of the respective speakers and do not imply and should not be understood to imply the endorsement or recommendation of Johnson & Johnson (or any of its affiliates) regarding any product, item or service.

In episode 3, the HealtheVoices Radio co-hosts (Robert Breining, Brady Dale Etzkorn-Morris and Dawn Gibson) and guests will discuss advice they have for health advocates, and how advocacy has changed over 2020. The hosts will discuss mastering your story, owning your successes, and understanding your audience. They will also dive into how the idea of advocacy has changed in 2020, from the perspective of both new and veteran advocates. Finally, they will talk about how to mentor new advocates, and how to find the next step on your advocacy journey based on the legacy you want to leave behind.

TW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation.   Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities. Tune in as Tina shares: that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV) that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8) that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home the cultural stigma associated with IBD as a woman of South Asian descent that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street that she developed her first rectovaginal fistula in 2011 — after one year of marriage how dehumanizing and desexualizing her experience has been that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in breaking point: when she became suicidal how her mom stepped up for her at her worst that she now lives with a permanent ostomy that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C) that in early 2016, her Crohn’s disease went into remission how she’s navigated disagreements between different doctors on her medical team that her currently-advised diet consists largely of soup and smoothies that one of her doctors now believes she may never have had Crohn’s, but possibly had severe inflammation all along that advocacy work has become a coping mechanism for her how COVID-19 has influenced her healthcare choices how she’s experienced prejudice as a racial, ethnic, and cultural minority — both within and outside the medical system that in many ways, “coming out” with her health story 2 years ago was social suicide for her — she lost friends who couldn’t handle either her illness or her outspokenness as an advocate the role of mental healthcare in her approach to wellness how she got involved in patient advocacy

Tiffany Kairos is the founder of The Epilepsy Network (TEN) Organization, a blogger, and an advocate with over 8 years of experience. Having lived with epilepsy for more than a decade, Tiffany is on a journey to share her story, help those who have been impacted by epilepsy find their voice and bring about education and awareness for all. In the Season 2 premiere, hosts Robert and Brady learn all about life with epilepsy, the ways Tiffany finds purpose in her platform, and how she and her husband, Chris, have become an unbeatable team. (Be sure to listen to hear what's on Tiffany's reading list, but she also highly recommends "The Power of Positive Thinking" for fellow bookworms!) 

Lauren Reimer-Etheridge lives well with a rare condition where her gut can’t absorb nutrition. Incompatible with life, Lauren takes and totally manages all her nutrition through her veins since age 13. In this fourteenth podcast episode in the series about Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care, Lauren talks about her advocacy with parents and young adults: showering, self-management, drugs, sex, and rock and roll. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title 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 at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Lauren Reimer-Etheridge 00:51. 1 Self-care 0 to 60 at age 13 06:05. 2 Independent agent transitions off a cliff 11:14. 4 Self-care with flexibility for disequilibrium 17:09. 5 Advocacy for the practicalities 18:59. 6 Sex, drugs, and rock and roll 23:16. 7 Warm hand-offs, extreme hand-offs, slow hand-offs 26:52. 8 A Pretty Couch Potato 30:55. 9 What do you have again? 32:54. 10 Reflections 35:06. 10 Links Find the full series here HealtheVoices Chronic intestinal pseudo-obstruction Sick Boys Lauren's blog and website: pretty couch potato Pretty Couch Potato on Instagram Notes Credits Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer Photo by Iker Urteaga on Unsplash About the Show Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life's realities in healthcare’s Tower of Babel.  Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Introducing Lauren Reimer-Etheridge Lauren We met at the HealtheVoices Conference in Dallas sponsored and paid in full by Janssen Pharmaceuticals with three hundred forty patient advocate participants selected by lottery, half newbies to the conference and half previous attendees. I was a newbie. A conference planned by patient advocates; sessions led by patient advocates. The amazing part of the HealtheVoices conference was hearing everybody being matter-of-fact and appreciative of the craziness of their particular brand of ways the body can go off the rails. If stories about this insanity appeal to you, I recommend listening to the podcast, Sick Boys. Again, find a link in the show notes. Lauren is 26 and has chronic intestinal pseudo-obstruction, which means that she doesn’t have peristalsis in her small intestines. Peristalsis is the worm-like movement that pushes food down from the stomach to the bowel. Not only that, but her intestines don’t do their job – absorbing nutrition from the food. We’ll be talking about the lines, tubes, ports, and feedings that Lauren needs to survive.

You’ve heard from HealtheVoices advocates about their individual journeys. Now hear about the journey of HealtheVoices as a movement—how we got started and how we’ve grown, in celebration of five years of HealtheVoices. Featuring program sponsors and partners, alongside advocates who’ve helped to grow this community from its start, this is a look inside what makes HealtheVoices so special—the advocates themselves. Guests include past advisors, speakers and attendees, Brooke Abbott, Megan Starshak, AnnMarie Otis, Gabe Howard and Dawn Gibson, alongside Caroline Pavis of Janssen and Laurel Netolicky of WEGO Health.

Whether you are an advocate, mental health professional, a family member or friend of someone who struggles with a mental health challenge, or you yourself live with your own struggles, we can all agree that raising awareness and doing our part to help erase the stigma of mental health is needed now more than ever.We can all do our own part, using our talents, gifts, and hard work to help make a difference in our local communities. After all, this is where we live, work, and socialize; it's where we spend so much of our time each day. So why not do what we can to make our little corner of the world a place where people can feel empowered to ask for help when they need it, and to not feel ashamed or alone.This is exactly what Cynthia Chazen is doing, with "The Stigma Free Zone", in her local community of Bergen County, New Jersey.The Stigma Free Zone, started by founder, Mary Ann Uzzi, in Paramus New Jersey, has a mission of inspiring public interest and open dialogues about stigma, raising awareness of the local mental health resources available, and breaking down barriers of mental health in local communities.Cynthia and I first met at the HealtheVoices Conference in 2018; she is an enthusiastic advocate who believes everyone can educate about mental health. She is the editor of the Stigma Free Zone News of New Jersey, and has a huge following on Twitter where she shares both local and global news about mental illness. You can subscribe to her newsletter by checking out her Facebook Page, SFZNewsofNJ.During our chat on this episode of the Beyond Your Past Podcast, we talk more about The Stigma Free Zone initiative, including:How the Stigma Free Zone movement started in New Jersey, and is spreading across the country.How you can get involved and create your own chapter in your local community. Get the toolkit here.You don't need to be a mental health professional or have a degree, to make a difference.How mental health education is the area for grassroots organizing.Giving people permission to talk about their own mental health struggles.Some of Cynthia's story of the challenges she faced in her life that inspired her to take action for others.Be sure and follow Cynthia Chazen on Twitter and check out the Facebook Pages for the Stigma Free Zone for more information on how you can get involved where you live.If you'd like to be a guest on a future episode of the podcast, you can contact me anytime. Don't forget to share this episode with someone who might need it; together we can all continue to make a difference.-Matthew Pappas, CLC, MPNLPAll conversation and information exchanged during participation on the Beyond Your Past Podcast, on BeyondYourPast.com, and BeyondYourPastRadio.com is intended for educational and informational purposes only. Nothing on these podcasts or posted on the above mentioned websites are supplements for or supersedes the relationship and direction of your medical or mental health providers. Support the show (https://www.buymeacoffee.com/sPH8pMZ)

Living with a mental health challenge of any type, often means that you go through many stages of exploration until you reach a true diagnosis that will allow you and your helping professional to put a plan in place of the proper treatment and self-care routine. Initially these types of changes in our mental health can often lead to having more questions than answers, but in time the new insight gained can be invaluable to our recovery. My guest on this episode of the Beyond Your Past Podcast, John Dickson, lived with Major Depressive Disorder for 40 years, before being officially diagnosed. As he shares on his blog, The3inMe.ga, ...Over the majority of that period, my illness was undiagnosed and untreated. It’s only in hindsight that I can see that I’ve experienced many depressive episodes. Each episode was both darker and longer in duration than its predecessor. The most severe episode culminated in a suicide attempt in September 2014. It was after this attempt that I was diagnosed as having Major Depressive Disorder. More recently I’ve been diagnosed with Bipolar II Disorder. Bipolar II Disorder differs from Bipolar Disorder in having a hypomanic state rather than a manic state. Hypomanic simply means less manic. I’m still coming to terms with this new diagnosis and don’t yet fully understand it. I’ll share what I learn in this blog. Depression is the silent killer. This is true especially, among men. Men remain silent and steadfast while they suffer. I was one of those men. I suffered in silence until I succumbed. This lesson has taught me to speak out about the dangers of silence and in this blog, I speak out. I also have a son and family who I love very much. This blog is for them. Here they can see for themselves that I’m recovering. John and I first met at the HealtheVoices 2018 Conference, in Chicago. We struck up a friendship there and have kept in touch since that event. You can listen to some thoughts that I had about the conference on a special edition podcast that I recorded this past spring.  During the podcast, we cover topics including: Why John is so open about sharing his mental health struggles. More about the events that lead to an attempt in taking his own life in September, 2014. How those events lead him into not only his blog writing but advocacy work. Talking specifically with your therapist or counselor about specific diagnosis treatments and options. How his life has changed since the events in 2014, including the new diagnosis of Bipolar II disorder and learning to understand what it means for him, including the hypomanic states that come along with it. Be sure and check out his blog, The3inMe.ga , as he writes weekly about his journey of understanding and healing, both past and present. John's message is one of vulnerable insight... an expression of hope, a declaration of love and a celebration of a life reclaimed. Ultimately, it’s my letter to my son, my apology and my promise. You can follow John on Twitter @Zelandroid009 If you haven't done so yet, please consider subscribing to the podcast, to get notified when I release new episodes each week! I'd sure be stoked to have you on this journey of inspiring others with the power of sharing their stories. -Matthew Pappas, CLC, CPNLP All conversation and information exchanged during participation the Beyond Your Past Podcast, on BeyondYourPast.com, and BeyondYourPastRadio.com is intended for educational and informational purposes only. Nothing on these podcasts or posted on the above mentioned websites are supplements for or supersedes the relationship and direction of your medical or mental health providers.Support the show (https://www.buymeacoffee.com/sPH8pMZ)

How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”  This episode was recorded on location at HealtheVoices in Chicago, under challenging conditions, which is why the audio is less than pristine, but the content is extraordinarily compelling. Stick with it, and you’ll be glad you did! Megan Johnson, The Front Butt YouTuber at:  YouTube: https://www.youtube.com/user/TheFrontButttuber Blog: https://thefrontbuttyoutuber.wordpress.com/ Facebook: https://www.facebook.com/thefrontbuttyoutuber/ Twitter: https://twitter.com/FrontButtYouTR/ Instagram: https://www.instagram.com/the_front_butt_youtuber/ Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/   "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/ Additional audio engineering courtesy Mac Cooney https://www.facebook.com/michaelandrewcooney/

Part two of the live recording of the Psych Central Show at HealtheVoices 2018. Our four panelists share more tales of their advocacy efforts, dispelling misunderstandings and false assumptions and comparing the similarities in their advocacy work. Hosted by Gabe Howard (www.gabehoward.com) and Vincent M. Wales (www.vincentmwales.com). Previous episodes can be found at psychcentral.com/show or on your favorite podcast player.

Part one of the first ever live recording of the Psych Central Show at HealtheVoices 2018. Four advocates of different health conditions join for a panel discussion on a variety of advocacy topics. Hosted by Gabe Howard (www.gabehoward.com) and Vincent M. Wales (www.vincentmwales.com). Previous episodes can be found at psychcentral.com/show or on your favorite podcast player.

I recently had the privilege of attending the HealtheVoices 2018 Conference, in Chicago. It was an incredible event where advocates representing over 40 mental and physical health communities came together for 3-day weekend of collaborating, education, and networking. It was my first time attending an event like this, and to be honest I really didn’t know what to expect. I did my research, watched videos, and checked out past event information, but still you never know until you get there right? I’m so grateful to Janssen Pharmaceuticals for the honor of being one of the mental health advocates there, representing Anxiety and Trauma Recovery. So, I decided what better what to share some of my experience at the conference than to do a podcast about it. Since, hey I’m a podcaster right! :) Thank you to everyone at Janssen who organized this amazing weekend, I’m so humbled and honored to have had the pleasure of attending. I learned so much, made new friends, and even met a few people that I already knew! The staff, the event organizers, the sponsors, and of course all of the amazing and dedicated advocates that I met have left a lasting impact on my life. I left feeling inspired and encouraged, realizing that we all have so much in common, even if our platforms are different. Our common goal of raising awareness, providing resources and encouragement and information to people just like ourselves, who need it now more than ever. We’re all living the experience for which we advocate for, pouring our heart and souls into this labor of love of doing all we can to help others while on our own journey. I’m not ashamed to say that I am a survivor, a recovering anxiety sufferer, and someone who is right there feeling all the pain and frustration in the trenches of recovery. Going to this conference was like feeling at home with 122 people that I’d never met before in my life. That’s the beauty of this event, everyone is there to learn, share, and encourage one another and to be reminded that none of us are ever alone on this journey of healing and recovery. I look forward to hopefully being invited back in 2019 to HealtheVoices! https://www.healthevoices.com/ -Matt Pappas, Coach, Podcaster, Advocate. Please consider leaving a review and subscribe on your favorite podcasting app. Janssen paid for my travel and accommodations for the event; my opinions are my own. Support the show (https://www.buymeacoffee.com/sPH8pMZ)

This week I'm joined by Molly Schreiber for a chat about traffic in the Washington, D.C. area, living with diabetes, managing diabetes on top of a rheumatoid arthritis diagnosis, comparing and contrasting experiences in different patient communities, and the upcoming HealtheVoices conference. Keep up with Molly on Instagram @mollyschreiber and atjax.net. Learn more about the 2018 HealtheVoices conference by visiting healthevoices. Run Time - 50:02 Send your feedback to feedback@justtalkingpodcast.com.