Choose Your Language:
Posted by: The Sumaira Foundation in NMOSD, Patient, Voices of NMO
Before September 2024, my life was full of movement. I was the kind of person who rarely sat still – playing pickleball, skiing in the winter, walking my dogs. Willow and Teddy, and traveling with my 3 daughters. Life was full, busy, joyful and active. My body was something I trusted.
I woke up and immediately knew something was wrong. The right side of my face felt numb as did my arm and my leg. When I tried to get out of bed, I fell and had no balance. I couldn’t walk; I was confused. I thought I was having a stroke.
At the emergency department, test after test followed. ECG, CT scan, bloodwork and MRI. I was admitted into the hospital for a couple of days waiting for answers. The neurologist ruled out a stroke but wanted to do further tests to see if it was multiple sclerosis (MS). I was tested for every autoimmune disease and had another MRI and later, a lumbar puncture.
I waited a few more weeks until the answer finally came: AQP4-positive and diagnosed with neuromyelitis optica spectrum disorder (NMOSD). My doctor told me it was a rare autoimmune disease that attacks the central nervous system.
The days following were dark and scary. Depression and anxiety crept in. The active, strong woman who was in control of her body was suddenly facing a disease I couldn’t understand or predict. No one in my family had ever heard of NMOSD.
I started to do more research and educate myself.
Then, I found The Sumaira Foundation. For the first time since my diagnosis, I didn’t feel alone. Through group meetings and attending TSF’s Toronto Patient Day in November 2025, I met others who understood the fear, the anxiety and the weight of living with NMOSD. People who spoke of similar experiences, similar feelings of uncertainty – and resilience.
This shifted my focus and I made the decision: this disease won’t define me.
I returned to playing pickleball. It wasn’t easy at first but I kept going, getting stronger and stronger each day. I was able to regain mobility and strength in my legs. I still have my limitations but learn to listen to my body and give myself grace.
Today, I feel I have a purpose to raise awareness about this rare disease. To connect with others who are newly diagnosed. To educate others. To be a part of a community of strength, resilience and hope. I am proud to be a TSF Ambassador representing the Ontario province. We will not be defined by NMOSD.
