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Max’s MOG Story – The Luckiest Kid in the World

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

On a warm February evening at the University of Miami, I sat in my Music Business lecture and wondered from where this strange soreness had come. There was a lingering discomfort each time I moved my left eye from side to side or up and down. My eyes had never been an issue and this was not similar to anything I had felt before.

The pain gradually worsened from Monday to Thursday; from Thursday to Friday, my vision appeared as a screen of static. That Friday marked the beginning of my new routine: the next three months were spent going from classrooms to waiting rooms, with accounting tests in the morning and blood tests in the afternoon.

Finally, two months later in April 2014, after three relapses and MRIs of my spinal cord and brain, intense regimens of steroids, a spinal tap, and countless hours in emergency rooms, infusion suites, and neurology offices – not to mention menacing uncertainty – I was diagnosed with Neuromyelitis Optica (NMO), a rare autoimmune disease affecting the optic nerves and spinal cord.

I remember the day I got the call. I sat in our fraternity suite on campus, watching my friends play ping pong while I listened to my doctor explain that the spinal tap and blood tests revealed a marker of an unusual but treatable disease that could require heavy medication for the rest of my life. His composure and clarity over the phone kept me calm and confident that this would not deter me from living a life I would be happy and proud to live.

I am now 23 years old and I have had multiple relapses since that conversation three years ago. I have completely lost vision in each eye for sustained periods, though luckily never at the same time. Every six months, I receive two separate infusions of Rituximab, a drug typically administered to people with lymphoma. Every morning, I take 2000 milligrams of CellCept, a pill used to combat reactions to organ transplants. For almost three years, I took high doses of prednisone and relapsed when I tried to taper off the drug. At one point, my face swelled up so much that an oblivious friend asked me if I had spent the entire summer binge drinking.

I tell people my story and they oftentimes lament how I am one unlucky kid…

…but I feel like the luckiest kid in the world.

I could not dream of a better support team. My doctors are among the world’s experts on Multiple Sclerosis and NMO. My fraternity brothers recently hosted the 3rd annual Puppy Palooza philanthropy, raising money for NMO research and treatment. My mother has devoted the last three years to finding unique ways to spread awareness about NMO and to raise money for the cause.

My health continues to improve. My vision has returned, save for one white spot in my left periphery and a little off coloring. I successfully tapered off prednisone and I have not experienced a relapse since the late summer of 2015. I will be attending law school in the fall and I aspire to a long and noble career. I am sure this won’t be the end of my obstacles, but however they choose to present themselves, I plan to live a rich and inspired life.

Thanks for reading.

Published April 14, 2017

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