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Sumaira’s NMO Story (from The Transverse Myelitis Association Blog – In Their Own Words”)

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Sumaira’s NMO Story

From the Transverse Myelitis Association blog, In Their Own Words (October 4, 2018)

My name is Sumaira and I am the founder and executive director of The Sumaira Foundation for NMO and Miss Bangladesh-USA 2015. Thank you for taking the time to read my story.

It all started in June 2014. I was a perfectly healthy 25-year-old woman living and working in Boston. At the time, I worked as the Director of Network Development at Boston Laser / Boston Eye Group, a multidisciplinary ophthalmology group best known in New England for restoring patients’ vision through LASIK and/or cataract surgery.

I spent a weekend in New Jersey celebrating the launch of my sister’s fashion line when I first noticed the black circle in my right eye. I brushed it off assuming it was a sunspot; summer had just started after all. I returned to the office Monday morning and noticed that the circle was not only still present, but had also increased in size and, pretty quickly, posed as an obstacle to getting work done. The office was relatively quiet because it was the week of July 4th and most of the doctors and staff were on vacation. I told the outgoing fellow that I was having trouble seeing and was hoping she could take a look. I had my first visual field test, and the doctor was simply startled when she saw the results; there was a significant visual field defect in my right eye. She showed one of the attending physicians who then ordered a full workup. Structurally speaking, there were no remarkable findings, but it was clear that I could not see. The attending physician called her neuro-ophthalmology friend for advice and an MRI was scheduled at Massachusetts Eye and Ear Infirmary (MEEI) for the following morning.

I went to MEEI the next day with my weekend bag assuming I’d be in and out and would be free to go to my friend’s house for the holiday weekend. Gosh, I was so naïve. Long story short, I was in the emergency room for 16 hours having seen five different specialists, who all scratched their heads puzzled by what was going on. It was one in the morning when I came out of my first-ever MRI in a completely dazed state when the neurology fellows informed me that inflammation on my optic nerves and chiasm had been detected on the scan and that I’d need to spend the weekend at Massachusetts General Hospital to receive a few doses of IV steroids. Truthfully, I was exhausted and disoriented from taking Ativan, so I agreed to everything in order to get some sleep. Three days later, I was diagnosed with idiopathic optic neuritis and discharged with a 16% chance of developing MS and expected full recovery within three months to one year. As instructed, I moved on with my life like nothing had happened. (Side note, I’ve always thought it was ironic that I got afflicted with a rare eye disease while working in ophthalmology – go figure!)

Three weeks later, I walked into a wall at my office. My skin was flushed, and I was nauseous. I felt a tingling sensation in my hands and feet. Something wasn’t right. The ophthalmic technicians reported that I had severe bilateral visual field defect and unable to read the large “E” on the Snellen chart (right eye was 20/600; left eye was 20/120). My boss told me to go to straight to the hospital as he feared it was only going to get worse. At the hospital, I was declared legally blind, got my first lumbar puncture (the worst!), had multiple brain and spine scans, and was discharged six days later. I was diagnosed with sero-negative neuromyelitis optica and began chemotherapy.  I left the hospital confused, terrified, and feeling isolated. How did this happen? Did I do something that triggered the onset? What was this disease? I had never heard of it and it didn’t seem like anyone around me had either. All I knew is that everything happens for a reason and I was determined to find out why.

After a month of bed rest and acclimating to my ever-changing new normal, I decided it was time to take matters into my own hands. In October 2014, I founded The Sumaira Foundation for NMO to raise awareness. The founding philosophy was that heightened awareness would ideally lead to increased funding for research and development, thereby getting us closer to a cure. I had no idea how to start, let alone run, a nonprofit organization but I was eager to get NMO on the map and have this community’s voice be heard. We are turning four years old this October and I’m really proud of how this organization has blossomed. Today, our team consists of 17 very talented individuals who volunteer their time, energy, and ideas towards illuminating the darkness of neuromyelitis optica. Our organization weaves light, color, and positivity into virtually everything we do which includes raising awareness, supporting research through our grants program, sharing stories through our “Voices of NMO” campaign, partnering with mission-aligned organizations to widen the reach of our impact, and creating a community for patients and their caregivers.

In terms of my health, while it’s not perfect, I’ve finally reached a point where I’ve rediscovered happiness, comfort, and peace. In four and a half years, I’ve had over 400 visual field tests, 100+ infusions comprising of 5 different chemo drugs, 14 MRIs/PET/CT scans, plasmapheresis, 13 visits to the emergency room, 13 specialists, 8 relapses, 6 inpatient hospital visits, 4 months of menopause, 4 eggs harvested, 3 surgical procedures in my bladder, 2 lumbar punctures, 1.5 years of Achilles Tendinitis/Plantar Fasciitis, one too many battles with insurance companies, and an injection in my right eye (OUCH!). That being said, I wouldn’t trade ANY of this! I am the woman I am today because of all my experiences and am truly living my best life. Through illness and the organization, I’ve met incredible and inspiring people who motivate me to keep pushing the envelope. My heart is so full and there is no greater honor than advocating for this community that deserves attention and representation.

Thank you, Transverse Myelitis Association, for sharing my story!

Sumaira Ahmed

[email protected]

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