Shekita, 38, Neuromyelitis Optica

How would you explain Neuromyelitis Optica to a child?

Neuromyelitis Optica is a rare disease affecting around 250,000 people in the world. It can cause blindness, paralysis, and an even sometimes more severe outcomes. Anyone at any age can get NMO. Doctors really don’t know yet how or why we get the disease. Unfortunately, it can affect children more severely than adults because your body are still growing and delicate. It can be a very scary disease however, it can be managed. If you start to feel that your body doesn’t feel you’re normal, always make sure to communicate what is happening to your parents. That way, you can get into the doctor to get an early diagnosis. Getting treatment after the doctors know you have NMO is super important because it will help you begin to feel better. Even though it’s hard, most often, you can still do some or all of the things you enjoy before NMO. You just have to do them differently. Always remember you may have NMO, but NMO does not have you!

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

I want the world to know more about NMO and what it is since it is rare.

What does it feel like to live with Neuromyelitis Optica?

To live with NMO can feel like having a cloud in your eye when you have vision problems or pain. Sometimes you can have nerve shocks in your body that feel like a stinging sensation or sharp pain, even sometimes it can be constantly itchy. You can also feel numbness like when a part of your body “falls asleep”. Lastly, NMO can cause a lot of pain, fatigue, weakness, and problems with thinking clearly.

What brings you joy?

What brings me joy is doing make up and you wouldn’t know I have a disability because I’m even better at it now! Also, I love connecting with others within the NMO community.

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