The founder and executive director of the Sumaira Foundation offered her perspective on the patient journey in NMOSD and the vital need to increase awareness [WATCH TIME: 9 minutes]
WATCH TIME: 9 minutes
“What was scarier to me was my acuity had gotten so bad, almost overnight. I went from being 20/20 in both eyes—even with the visual field deficit—in a period of 2 days, I was 20/600 and 20/120. I couldn’t even identify the ‘E’ on a Snellen chart.”
Neuromyelitis optica spectrum disorder (NMOSD), although rare, has become a well-known condition for neurologists who treat patients with autoimmune disorders—though perhaps not among the general population. Its complications can include vision loss, color vision deficiency, paralysis, paraparesis, weakness, numbness, spasticity, vomiting, hiccups, and bladder/bowel dysfunction. Currently, there are 3 FDA-approved therapies available for the treatment of patients with aquaporin-4 (AQP4) antibody positive NMOSD.
Although, for those who are seronegative for APQ4, the disease can be somewhat more difficult to diagnose and treat. One such individual with seronegative NMOSD is Sumaira Ahmed, the founder and executive director of the Sumaira Foundation. Diagnosed in the summer of 2014, while in her early 20s, Ahmed built the foundation almost immediately afterward to help generate awareness of NMOSD (and the related myelin oligodendrocyte glycoprotein antibody-associated disease [MOG-AD]) and support research, advocacy, and other efforts.
In a conversation with NeurologyLive® Ahmed told her diagnostic story that led to her to found the Sumaira Foundation, and offered up her experience as a patient, highlighting the difficulties she faced from a disease burden perspective as well as in getting the correct diagnosis. She also spoke about her motivation for starting the Sumaira Foundation and her goals to raise awareness.