Choose Your Language:
Posted by: The Sumaira Foundation in NMO, ON, Patient, TM, Voices of NMO
I was honestly exhausted and beaten down. By this time, I already had 9 major surgeries including both hips replaced with a total of 4 surgeries on them, 4 spinal surgeries, a complete hysterectomy due to excessive bleeding (60 days!) and of course, 2 blood transfusions within two weeks of each other.
Even with access to the best doctors and care, my health just continued to get worse. I had 2 bouts of blindness (optic neuritis) and eventually ended up in the hospital unable to walk after a physical therapy session at the world-renowned Barrow Neurological Institute. This was the defining moment. At first I was diagnosed with MS, but after 6 weeks, I met with Dr. Aguis at Barrow who after an hour and 40-minute appointment and review of all my MRI’s and records over the past several years, thought I should be tested for NMO. He was certain this was my diagnosis, and YES, that was the day.
Relief came over me because I finally had some answers, but little did I know of the severity of this condition. I began treatment immediately aside from the steroids administered in the hospital. I continued to have allergic reactions to the medications and so the story continues…
I have continued to try and live and function, but the multiple diagnosis and significant pain I am living with daily is a struggle for sure, but I am extremely grateful that I can walk and see as many who have NMO cannot. This disease has definitely helped me to appreciate every moment and not take my health for granted. I was in the best shape of my life just 5 years ago and I can barely lift my arms above my head without significant pain and fatigue and couldn’t tell you which condition/disease causes this, but what I do know is that it really doesn’t matter; I will continue to fight and make the best of this crazy life of mine and be so very grateful for every minute!
Something that has come to my mind through all of this is how I was an extremely premature baby 48 years ago. I was born at 29 weeks and was a twin that was discovered weeks after my twin brother miscarried. I weighed 2 pounds and they wrote me off as good as dead to my distraught mother. Somehow, I survived! Nowadays, babies are born even earlier and are kept alive, but so long ago, they didn’t have the resources they do now. I firmly believe that surviving such a premature birth, I became susceptible to many congenital abnormalities that I have noticed even as a very young child.
I’m not certain of NMO and if we can have it dormant in our bodies like chickenpox, but I can tell you this: I believe that I’ve been battling many of these conditions from the time I was very young and hope and pray that this foundation will continue to raise awareness to help find some answers and even a cure!