Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
It all started with an itch at the back of my neck that continued for about three weeks without any sign of a rash or anything that could be causing it.
Then suddenly everything went awry – the weight of a single strand of hair on my neck felt unbearable, the shower felt cold on one side of my body and hot on the other, I lost sensation and strength in my left arm and suddenly couldn’t hold a pen or lift my purse.
I was hospitalized and treated for “acute demyelination of the spinal cord,” with no precedent or known cause.
My sensory symptoms passed, and with a month of physiotherapy, I regained full strength and function in my hand.
And then, I had a couple more episodes of varying sensory and motor disturbances over the next 15 months.
Thirteen years ago, I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD)—a rare chronic autoimmune disease of the central nervous system, often misdiagnosed as multiple sclerosis.
Being a science communicator, I looked for evidence. I went to doctor’s appointments, armed with research papers in my hand, questioning them about clinical trials, treatment options, and their recommendations.
I met doctors on both ends of the spectrum:
I avoided disclosing my condition professionally unless absolutely necessary, and on the rare occasions I did, it was with considerable embarrassment.
I was worried about being seen as a liability, getting unsolicited sympathy and allowances, and being denied equal opportunities for professional development.
Earlier this year, when I decided to pivot my career path toward patient engagement, I had to grapple with the uncomfortable idea of my patient status becoming my professional identity.
I began disclosing my condition in one-on-one conversations with folks working in patient advocacy, and they would all tell me that my lived experience could only make me a more powerful advocate.
I could see it in my head but did not yet believe it in my heart.
Then I met patient warriors like Trishna Bharadia, Rachel I. Koh, and Sumaira Ahmed – brilliant professionals who are beyond inspirational and shatter all stereotypes of what a patient looks like.
While coming out still feels daunting, I’m so excited to join The Sumaira Foundation as their Ambassador for India and help illuminate the darkness of NMOSD and MOGAD.
For the last 13 years of my career, I had to be good at what I did DESPITE my condition…
