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Illuminating NMO: The Power of the Patient Voice

Feb 24, 2021 10:08:37 AM

In a new podcast, Sumaira Ahmed, Founder of the Sumaira Foundation shares her story around Neuromyelitis optica and how she started a foundation that's mission is to amplify NMO patient voices and raise money for researching a cure.

 


The Sumaira FoundationThe Sumaira Foundation for NMO is a 501(c)(3) organization dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to help find a cure, and creating a community of support for patients + their caregivers.
 

"Neuromyelitis optica (NMO) is a central nervous system disorder that primarily affects the eye nerves (optic neuritis) and the spinal cord (myelitis). NMO is also known as neuromyelitis optica spectrum disorder or Devic's disease. It occurs when your body's immune system reacts against its own cells in the central nervous system, mainly in the optic nerves and spinal cord, but sometimes in the brain.

 

The cause of neuromyelitis optica is usually unknown, although it sometimes appears after an infection, or it can be associated with another autoimmune condition. Neuromyelitis optica is often misdiagnosed as multiple sclerosis (MS) or perceived as a type of MS, but NMO is a distinct condition.

Neuromyelitis optica can cause blindness in one or both eyes, weakness or paralysis in the legs or arms, painful spasms, loss of sensation, uncontrollable vomiting and hiccups, and bladder or bowel dysfunction from spinal cord damage. Children can have confusion, seizures or coma with NMO. Neuromyelitis optica flare-ups might be reversible, but they can be severe enough to cause permanent visual loss and problems with walking."

 
Sumaira Ahmed

Written by Sumaira Ahmed

Sumaira Ahmed is an influential and passionate advocate for rare autoimmune diseases and recently joined Medable’s Patient Advisory Council to support community development and increase inclusivity. She founded The Sumaira Foundation for neuromyelitis optica spectrum disorder (NMOSD) shortly after she was diagnosed with sero-negative neuromyelitis optica/CRION. The Sumaira Foundation is geared towards generating global awareness and finding a cure for NMOSD. Additionally, in 2015, Sumaira became the 1st Miss Bangladesh-USA advocating for equal opportunity education for the children of Bangladesh in efforts to increase tolerance and strengthen the country’s international presence, economy, and infrastructure.

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