Congenital Myasthenic Syndrome

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1 of 20 Podcast

Jonathan Cappiello

53 episodes

6 days ago

Jonathan Cappiello was diagnosed with a rare genetic disorder that only 20 people in the world have. The condition is called 3 hydroxyacyl coa synthase deficiency, which in short compromises his immune system and his body cannot process fats. Each week, he will discuss his lifestyle, his diet, and how he adapted to his condition. Additionally, he has a variety of guests to talk about their conditions. If you’re interested in genetics, rare disorders, medicine, and healthy living-- this is the podcast for you!

Medicine

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Medicine

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Congenital Myasthenic Syndrome - Siobhain Carolan

1 of 20 Podcast

25 minutes

6 months ago

Congenital Myasthenic Syndrome - Siobhain Carolan

Season 5, Episode 12: In conversation with Siobhain Carolan

→ About Siobhain: Siobhain Carolan is a rare disease patient with Congenital Myasthenic syndrome and was misdiagnosed for 10 years. Despite her challenges, she has found her voice in advocacy, especially with the Everylife Foundation. I met Siobhain in 2023 through Rare Disease Week on Capitol Hill. She is a fellow Connecticut rare warrior and a dear friend.
She is using her voice to fight for a better tomorrow on all levels from her hometown in Connecticut to Washington D.C. Her next and most exciting venture will be on May 31 in Boston, where “Team Shivvy” will be walking to raise awareness and funds with @myastheniaorg .

All funds raised support the Myasthenia Gravis Foundation of America (MGFA), the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis.
→ What is Congenital Myasthenic Syndrome?: CMS is a group of inherited neuromuscular disorders that cause muscle weakness due to problems at the neuromuscular junction, where nerves and muscles connect.
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