Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
I started calling this thing my “venom” because it reminded me of a venomous character that took over my entire being without letting go. My venom’s name is NMOSD (neuromyelitis optica spectrum disorder). It relentlessly attacks my brain and spinal cord.
Let’s rewind to 2008 – I had 3 little ones at home, going through a divorce, going blind and in so much pain both mentally and physically. I was visiting doctor after doctor, trying to find clues to answer what was going on with me. But the neurologist told me it was nothing.
The doctors couldn’t identify a legitimate problem and I also could not explain my symptoms properly. The incessant hiccups, overwhelming nausea and GI issues were raging with zero relief. Ultimately, I blamed my symptoms on stress and depression, convincing myself that whatever was going on, was in my head. The symptoms that kept creeping in and out were toying with me. It wasn’t funny; it was sinister. In 2012, I lost my vision again. After 3 separate trips to the ER, I was diagnosed with optic neuritis. After I completely lost vision in my right eye, I was diagnosed with multiple sclerosis (MS).
The venom was getting what it wanted. By this time, I was losing feeling, stumbling more with hiccups and nausea. I grew more frustrated overtime because the neurologist kept citing stress as the sole source of my worsening symptoms.
That didn’t happen until 2016 when I lost complete use of my legs and a new neurologist ordered an exhaustive list of tests to get to the bottom of this. The last test she ordered was the auquaporin-4 antibody test for NMOSD. It came back positive. I finally had an answer and a name for this venom.
The diagnosis was followed by an overwhelming wave of devastation and grief as I came to understand the disease. I felt scared, confused and angry. However, finally feeling heard helped to begin the healing process and taught me ways to cope and fight the disease.
NMOSD definitely rears it ugly head and I have to consciously pull myself back from the darkness every time it does. The steroids, plasmapheresis, infusions among many other things help me fight back in order to live some semblance of a normal life, albeit, a new normal.
Regardless of what I call it, NMOSD appears to not being as rare as it once used to be. So now, I am excited and motivated to join the fight as the TSF Ambassador of South Carolina to raise NMOSD awareness so that others impacted by the disease do not have to go through the nightmare I went through.
I always say that if I can help another person, then my struggle with NMOSD will have all been worth it. I’m but a small drop in the huge bucket of this world but if my splash lands on someone else and inspires them to keep the awareness alive and moving then I will have fulfilled my purpose.
Much love and strength to all of my fellow warriors and please hold your head up high to keep fighting the good fight <3
