Aldelly, 34, Neuromyelitis Optica

Aldelly Neuromyelitis Optica Hero Feature for 52 Essential Inclusion Skills

How would you explain Neuromyelitis Optica to a child?

I have a disease that prevents me from properly using my body. For example, I can walk, but I look like a penguin walking because I have spasms. I have to take special medication through a needle every six months to help me feel better. I try to prevent getting more sick by washing my hands & eating loads of fruits & vegetables.

What would you want the world to know about Neuromyelitis Optica?

I want the world to know that this disease doesn’t stop me. Even though I use a wheelchair, I can still drive, travel on a plane & much more. This changes my lifestyle but not my life.

What does it feel like to live with Neuromyelitis Optica? 

Living with NMO feels like an additional job. Besides running my own businesses, I’m a mother of two boys, a dog mom & wife. I have to tend to all, and it gets exhausting, but worth it all!

What brings you joy?

Food always brings me joy. My family brings me joy. Helping people brings me joy which is why being an advocate also brings me joy. Just enjoying life is a joy in itself.