Donate to Illuminate Contact TSF
Visit us on Facebook Visit us on Twitter Visit us on YouTube Visit us on Instagram Visit us on Linkedin Visit us on Tiktok

Choose Your Language:

Mileidys’ NMO Story – It May Not Be Easy, But It Is Not The End

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

I was born and raised in Cuba where I played outside, ran, and enjoyed time with my friends. In my healthy teen years, I didn’t think I’d ever become chronically sick, much less, stop walking.

I remember watching a movie about a boy named Lorenzo who suffered from a degenerative neurological disease that causes paralysis. I started wondering what life would be like if I could not walk and how that would impact my loved ones. I never imagined that many years later, I really would suffer from a degenerative neurological disease that can cause paralysis.

Years later, I moved to Florida, in the United States of America. I had so many dreams. Even though I was 30 when I moved, I still wanted to go to college. My plan was to work at the local Volkswagen dealership to save money for college and buy a car. After I accomplished that, I was accepted to an accelerated registered nurse program. I was so happy, thinking one day I’d graduate and be able to help my family in Cuba more.

One day I was driving down the highway in the rain (one of those heavy rains that Floridians are familiar with) when my vision blurred. The next thing I knew, my body’s left side felt dead, and I had no idea what was happening.

I was trying to find the nearest emergency room but was unfamiliar with the area I was driving through. The other drivers frantically honked their horns because I was driving too slow.

Once I got to the emergency room, they ran some tests. They did a CT scan of my head rather than an MRI because the latter was reserved for severe cases. The hospital staff sent me home because they couldn’t find anything abnormal in the CT scan results. This was the beginning of a long series of visits to the emergency room before they finally admitted me to the hospital. I had become paralyzed from my hip down.

I couldn’t believe what was happening, and the neurologists had no idea what I had.

They asked where my family was, and I replied that they were in Cuba, but I didn’t want them to be informed because there was nothing they could do from there.

The only support I had outside the hospital was my boyfriend, now my husband, but we had just started dating. I thought my medical mystery was a huge responsibility for someone who barely knew me. Despite that, he stood by me, even gathering friends from our old church for help.

To make a long story short, I spent two years in and out of hospitals without a diagnosis.

IV steroids relieved my condition for a while before everything returned to the same vicious cycle. After those two years, an entire team of neurologists diagnosed me with multiple sclerosis (MS) and then prescribed treatment for it.

Frustratingly, I was getting worse and worse, to the point that I was paralyzed from my neck down. I was taken to a different hospital. After three months, I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), previously known as Devic’s disease. It’s a rare neurological degenerative disease that little was known about back then. My doctors only knew that it had no cure and the medicines prescribed for multiple sclerosis worsened my NMOSD condition.

Since then, I’ve been on a medication that is not approved by the U.S. Food and Drug Administration, though it has prevented a new relapse. Thank God I resumed my life, though I had to make some adjustments. I finished my bachelor’s degree — not in nursing but in education — and got married.

Now I work as a certified medical interpreter helping members of the Spanish-speaking community with limited English proficiency overcome language barriers at their medical appointments.

I want to assure you that although having NMOSD or any other rare disease is not an easy road, it’s also not the end of your life.

I really hope and pray that my experience will encourage you.

Industry Partners

Community Partners

WARNING: Internet Explorer does not support modern web standards. This site may not function correctly on this browser and is best viewed on Chrome, Firefox or Edge browsers. Learn More.