Ep 155 Stiff Person Syndrome: A rare disease in the spotlight
10/22/24 • 83 min
3 Listeners
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
Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu
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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:
National Organization for Rare Diseases
Genetic and Rare Diseases Information Center
Johns Hopkins Stiff Person Syndrome Center
Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu
See omnystudio.com/listener for privacy information.
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This Podcast Will Kill You - Ep 155 Stiff Person Syndrome: A rare disease in the spotlight
Transcript
Hi.
Speaker 2My name is Alison Lafferty. I'm currently in Nevada and I suffer from stiff person syndrome. So I was diagnosed in November eighteenth, twenty twenty one, after almost two years of searching for a diagnosis. I started out going the orthopedic route because my symptoms were tightness in my back, spinal type pain, heaviness in my trunk area, and pain that went down my legs when I would walk.
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