#49 Living with NMOSD: Alex Brito's Journey of Resilience and Advocacy

In this inspiring episode of It Happened To Me, hosts Cathy and Beth sit down with Alex Brito, a remarkable advocate in the rare disease community and one of the first 100 individuals diagnosed with neuromyelitis optica spectrum disorder (NMOSD). NMOSD is a rare neurological disease that affects an estimated 6,000 Americans, causing severe and unpredictable relapses that can lead to vision loss, chronic pain, and paralysis.

Alex shares her journey, from the challenges of misdiagnosis and temporary paralysis to her empowering outlook on life with NMOSD—she affectionately refers to the condition as “her bestie.” Alex’s dedication to advocating for individuals with disabilities is evident in her work teaching adaptive technology to those with vision loss. Her incredible resilience is matched by her active lifestyle, which includes powerlifting and earning the distinction of being the first blind woman to achieve a yellow belt in Krav Maga.

Listeners will also learn about Alexion's short film, Rare Connections in NMOSD (Accessible Version), which highlights Alex’s story and helps raise awareness about this rare disease.

Key Takeaways:

• What is NMOSD, its symptoms, and the challenges in diagnosing this rare condition.
• Alex’s personal journey with NMOSD, including vision loss, paralysis, and finding strength in adversity.
• The importance of adaptive technology and how Alex empowers individuals with vision loss.
• Alex’s inspiring accomplishments as a powerlifter and martial artist.
• Insights into Alexion’s short film Rare Connections in NMOSD and its impact on awareness and advocacy.

Resources Mentioned in This Episode:

• Watch Alexion's short film, Rare Connections in NMOSD here
• Alex mentioned using JAWS, a screen reading program for those with vision difficulties
• Support organizations for NMOSD that Alex recommends in the episode are The Guthy-Jackson Foundation and The Sumaria Foundation
• Learn more about NMOSD through the organization NMOSD Won’t Stop Me 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

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