Season 4, Episode 11: In conversation with Madison Bowe.
Who?: Madison Bowe, an incredible patient advocate.
Rare Disease Connection: Madison is an individual living Stiff Person Syndrome. She is leveraging her experience with a rare disease and the challenges of her diagnostic journey to advocate for a better future for others facing similar health struggles.
What is Stiff Person Syndrome: Defined by the National Organization of Rare Diseases (NORD )Stiff person syndrome (SPS) is a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms. Spasms may occur randomly or can be triggered by a variety of different events or circumstances including a sudden noise, light physical contact or when exposed to cold. The severity and progression of SPS varies from one person to another.
Where to find Madison?:
@catholicinspiration09 on Instagram or madisonbow95@yahoo.com
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