My name is AnneMarie and my journey with NMO began in 2002 when I was just 16 years old…
One April morning, I woke up with a stabbing pain in my lumbar spine which was getting progressively worse. My mom rushed me to the local emergency room where they had taken x-rays and done bloodwork. While I was waiting to hear about my lab results, I began to experience tingling and loss of sensation in my legs. The doctors thought it was simply from sitting too long and suggested standing up. When attempting to do so, I quickly hit the floor like a sack of bricks. The panic of my family and concern of my doctors about my new paralysis led to a complete series of MRI’s of my spine. The images revealed inflammation of the lower thoracic portion of my spinal cord, which was consistent with transverse myelitis, and that was the diagnosis I was handed.
Prior to all this, I had been looking forward to my junior prom and already had a gown at home waiting for the occasion. Not only was prom an uncertainty while I was hospitalized, but my worries about walking again. I spent a few weeks in the pediatric unit at the hospital receiving steroids to help the inflammation subside in addition to physical therapy to hopefully reverse my paralysis. I returned home a few days before prom and was able to attend with my rigid legs and catheter bag strapped to my right leg. (NO ONE was going to stop this teen from living!)
A year and a half later, I was working at Chili’s as a server when my vision began to fade in my right eye, along with an excruciating headache during my shift. Worried about what was going on, I made my way to the emergency room yet again. More MRI imaging was done and I was told it was optic neuritis. I had been seen by both neurology and ophthalmology and received more steroids to combat the inflammation. My vision returned only to be followed by an attack of optic neuritis on my left eye a few weeks later. The doctors at my local hospital scared me when they stated that whatever was going on with me was outside of their comfort level and suggested I go to a university hospital.
I gathered my records and headed to Northwestern Memorial Hospital in Chicago where my neurologist reviewed all my data and images, then mentioned he believed that I should get tested for NMO at the Mayo Clinic. My family and I struggled to find information about the condition because it was rare but knew that Dr. Weinshenker, was going to have more answers for us.
I had a lengthy phone conversation with him standing in the lobby of my college, (some things you just don’t forget) and we made the journey to the Mayo Clinic in Rochester, Minnesota where, thankfully, the diagnostic test was recently developed. After doing the blood test and full spine MRI’s at the clinic, I was confirmed to have sero-positive neuromyelitis optica and now had a name to associate with my health problems.
Since then, I have gone either blind or paralyzed from my waist down more times than I can remember. The disease cut short my studies in nursing school and physical therapist assistant degree programs, leaving my massage therapy certification as my fall back option. Throughout my educational journeys, my neurologist had tried numerous preventative treatments and exhausted all options with no real success. I had even gone into a coma from one of the widely-used therapies, which made my family and doctors unsure about what to do next. Hence, I participated in the phase one drug trial of Soliris and am happy that it has become an approved drug therapy.
In March 2015, I experienced my most severe relapse ever which made me completely blind and paralyzed from my neck down.
No one can truly prepare you for such a devastating crisis like that.
I spent five months between Northwestern Hospital and the Rehabilitation Institute of Chicago. There was so much joy in being able to feed myself and being able to stand once again. I just could not wait to return home to my dog and gain a new sense of normal. I have since recovered mobility but remain completely blind, which is proof of my strength and the power of self-determination.
While sitting around at home, I decided to return to school to complete my bachelor’s degree in psychology. After being the first totally blind individual to graduate from Loyola University and my class’ commencement speaker, I set forth to pursue my master’s in social work. I still have balance problems and sensory deficits from my waist down which I know will make things difficult, but I strive to hold on to the positive things in life.
I want to apply all my knowledge and experience of advocating for myself to help others navigate through this disease and hopefully connect them with valuable resources which can help. In 2019, I created an online support group and most recently, I became an ambassador for The Sumaira Foundation to help shed light and raise awareness of this rare disease.
Hopefully through our joint efforts with other efforts around the world, we can help reach others and illuminate their path forward. With my family and furry companions alongside me, I cannot wait to see how this endeavor will unfold while we pray for a cure!