Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
It was October 2019, I was a young mom at 25 years old toting around a toddler and an infant, and had my hands full in the most beautiful and exhausting ways.
I had gotten a run-of-the-mill cold that I had been fighting for about a week or so when my eyes started to feel funny; it was a feeling I still can’t quite explain. I had gone to an urgent care and was told I likely had some inflammation in the muscles around my eyes so I was to go home, take ibuprofen and sleep it off.
I went quickly to the Moran Eye Center in Salt Lake City, UT, and started the process of finding and scheduling an MRI for my brain. Over the subsequent few weeks, I received 4 MRIs scanning my brain and spinal cord. I then met with a neuro-ophthamologist who showed me the many lesions all throughout my central nervous system – “diseased white and gray matter,” she said. I was put on multi-day IV steroids and she referred me to an MS specialist. My appointment was scheduled for many months in the future.
At the time, I was processing what this could all mean, I had a dear friend who was interning for a neurologist in Provo, UT. He heard about what had been going on and asked if he might be able to take my scans to show to this doctor he was working with. I got a phone call that evening from the doctor asking if I could come into the office the following morning before they opened for the day.
The following morning, my husband and I went into this VIP appointment and soon got the news that what I had was something far more rare and far more serious than MS; I had neuromyelitis optica.
On the one hand, this didn’t feel as dire because I’d never heard of this condition before; it just felt like an innocuous word jumble. On the other hand, however, I felt the weight of what this could mean for my life and the lives of my young kids. Chemotherapy? Indefinitely? What kind of life would that be?
In the midst of the discombobulation, fear, sadness and disbelief, I robotically went about the task of authorizing my treatment with my insurance provider as well as finding a facility to receive treatment and making an appointment to infuse the necessary drugs. Luckily for me, as I know it can be a much more brutal fight for so many patients out there, I was sitting in our local cancer center receiving my first Rituxan infusion less than a month after that fateful, dark morning.
While the next year post-diagnosis is a bit of a blur, I look back over time and can see how I developed deep strength and resilience to navigate the world of rare neuroimmunology with confidence (as of October 2025, we’re 6 years in!).
I battled numbness, tingling, drop foot, bladder and bowel difficulties, and of course my disrupted vision, but as I got more of a mental footing in this new season of life I was filled with optimism for what the future might hold. I continued with treatment on Rituxan and have been happily in remission for 3 years and celebrate every day I get to wake up and experience the world.
There have been plenty of ups and downs since I was diagnosed with NMOSD but I can confidently say that I am stronger in every meaningful way now than I have ever been and I am more optimistic about what the future holds. I truly believe the best days of my life are ahead of me.
