Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today!

Links:

National Organization for Rare Diseases

Genetic and Rare Diseases Information Center

Johns Hopkins Stiff Person Syndrome Center

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Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today!Links:<a href="https://rarediseases.org/">National Organization for Rare Diseases</a><a href="https://rarediseases.info.nih.gov/">Genetic and Rare Diseases Information Center</a><a href="https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/stiff-person-syndrome">Johns Hopkins Stiff Person Syndrome Center</a>Support this podcast by shopping our latest sponsor deals and promotions at this link: <a href="https://bit.ly/3WwtIAu">https://bit.ly/3WwtIAu</a> Learn more about your ad choices. Visit <a href="https://megaphone.fm/adchoices">megaphone.fm/adchoices</a>

This podcast might not actually kill you, but Erin Welsh and Erin Allmann Updyke cover so many things that can. In each episode, they tackle a different topic, teaching listeners about the biology, history, and epidemiology of a different disease or medical mystery. They do the scientific research, so you don’t have to.
 
Since 2017, Erin and Erin have explored chronic and infectious diseases, medications, poisons, viruses, bacteria and scientific discoveries. They’ve researched public health subjects including plague, Zika, COVID-19, lupus, asbestos, endometriosis and more.

Each episode is accompanied by a creative quarantini cocktail recipe and a non-alcoholic placeborita.

Erin Welsh, Ph.D. is a co-host of the This Podcast Will Kill You. She is a disease ecologist and epidemiologist and works full-time as a science communicator through her work on the podcast. Erin Allmann Updyke, MD, Ph.D. is a co-host of This Podcast Will Kill You. She’s an epidemiologist and disease ecologist currently in the final stretch of her family medicine residency program.

This Podcast Will Kill You is part of the Exactly Right podcast network that provides a platform for bold, creative voices to bring to life provocative, entertaining and relatable stories for audiences everywhere. The Exactly Right roster of podcasts covers a variety of topics including science, true crime, comedic interviews, news, pop culture and more. Podcasts on the network include My Favorite Murder with Karen Kilgariff and Georgia Hardstark, Buried Bones, That's Messed Up: An SVU Podcast and more.

This Podcast Will Kill You

Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today!

Ep 155 Stiff Person Syndrome: A rare disease in the spotlight

https://api.omny.fm/orgs/e73c998e-6e60-432f-8610-ae210140c5b1/clips/84689a54-29a9-4da6-a44a-b24c011452db/transcript

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