Choose Your Language:
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.
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 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.
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.
