Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.
You're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.
NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org or email nordpod@rarediseases.org.
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