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Caryn’s NMO Story – Building A United Front

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

My NMO journey began in 2018. It was Martin Luther King Day.

I was visiting my parents for the weekend. When I got up in the morning, I remember looking around and thinking everything looked so foggy. When I closed my left eye and looked out of my right eye, all I could see was gray and black. I didn’t understand what was happening because otherwise, I felt okay.

I went to my eye doctor the following week. He looked into my eye and told me to go directly across the street and pick up a prescription for prednisone, and he made an appointment for me at Mass Eye and Ear in Boston.

I saw a neuro-ophthalmologist and was diagnosed with NMO. It would actually be three more years of back-and-forth questioning, “is it NMO? Is it something else?” During this time, there were relapses, lots of testing, and treatments.

Finally, I was diagnosed with sero-negative NMO.

Backing up to the months before losing my right eye vision, I had been pretty sick with mono, shingles, MRSA, and Lyme – all within three months of each other.

I had been working as a private chef and was also grooming dogs. Both very physically demanding jobs. I had been an athlete all my life and enjoyed being active and always on the go. One day at work, I had to sit down because my legs started hurting really, really badly. When I sat down, I noticed they started to vibrate.

I got up to get back to work, but my legs would not work.

I was trying not to draw attention to myself, but each step was a struggle. I was thinking, “Oh my God, what is happening?” Looking back, I believe that was the true beginning of my disease. From that point until now, I still have leg pain and vibrations. The vision in my right eye is not coming back. I can no longer work as a chef or groom dogs. Both were my life. But I’m blessed to have my beautiful daughter Lyndsay as my caregiver wherever I need her.

What can I do?

I can educate myself, educate others, advocate for myself, use my voice, and tell the world about NMOSD/MOGAD.

I can tell them there is no cure. I can raise money for funding. I can raise awareness. I can share my experience, strength, and hope so that one day it won’t be a disease, nobody has heard of.

Let’s weave our common bonds of NMO together and, as a united front, show the world what strength and resilience looks like.

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