Sumaira Ahmed has spent much of her life in the spotlight. She has danced on stages all around the world, including at Madison Square Garden, and appeared in a host of ads and music videos. In 2015, she was crowned Miss Bangladesh-USA.
However, it wasn’t until she became a patient that she found the role she might have been born to play.
“I like to say that I’ve lived so many different lives,” Ahmed says. “But this current one feels so important.”
Ahmed’s journey began at age 3, when she started training in Kathak dance, a genre of ancient Indian classical dance. In her teen years, she moved to Mumbai and enrolled in acting school full-time. It wasn’t long before she was a stage and screen regular.
“Even as a toddler, I knew I wanted to be in front of the camera. There was something so wonderful about becoming somebody else and then going back to being yourself,” she says. “I wanted to be in Bollywood films.”
At age 18, she put her career on hold to study public relations at Boston University. “I was always surrounded by adults growing up, so I took a break for college. I figured that it would be good as an entertainer to have a basic understanding of how PR works,” she adds.
Upon graduation, Ahmed planned to resume her performing career. But life interfered in the form of a family tragedy. She decided to remain in Boston for an additional three years, working in a handful of roles for Boston Eye Group.
That experience proved more relevant than anyone might have expected when, in June 2014, Ahmed noticed a black spot in the vision of her right eye. Initially she thought she might have accidentally gazed into the sun for too long. But within three days, the spot grew to the extent that it blacked out the entire vision in her eye.
The doctors couldn’t detect anything structurally wrong; they could only see that she couldn’t see, and promptly scheduled an MRI exam. And so it was that Ahmed showed up at Mass General Hospital right before the Fourth of July. She was so confident that she’d be in and out within hours that she brought a bag packed with clothes and everything else she’d need for her vacation plans over the long weekend.
Instead, Ahmed spent 14 hours in the emergency room, evaluated by half a dozen specialists who couldn’t figure out why a 24-year-old woman was suddenly losing her vision in her right eye.
“They were scratching their heads, because I was otherwise healthy,” Ahmed says.
The MRI revealed optic nerve inflammation, prompting the team to administer three days of steroids and settle on a diagnosis of optic neuritis. While the condition is often a precursor for multiple sclerosis, the doctors assured Ahmed that her vision would return in three months.
“The message was basically, ‘Move on with your life,’” Ahmed says. “It seemed so not serious. They were all acting real cazh, so you start acting real cazh too.”
The level of concern escalated quickly. Ahmed’s vision started regressing again in early August, slowly at first and then rapidly: from 20/20 in both eyes to 20/600 in her right eye and 20/120 in her left eye. This happened over the course of a mere three days, coinciding with her 25th birthday.
“I couldn’t feel my hands. I had horrible nausea. At some point I just collapsed and they rushed me to the hospital,” Ahmed recalls.
At this visit, finally, she was properly diagnosed. The doctors told her that she had seronegative neuromyelitis optica spectrum disorder (NMOSD), a chronic autoimmune condition characterized by inflammation of the optic nerve (optic neuritis) and spinal cord (myelitis). While there is currently no cure, the Food and Drug Administration has approved three therapies to treat it.
The diagnosis came as both a relief and a shock. “At first, all I was able to deduce was, ‘There’s something wrong with my brain and my eye,’” Ahmed continues. “It’s one thing if you injure your hand or something, but to have a problem with your brain — that’s different.”
An intense treatment period ensued: three weeks of bed rest, some chemotherapy, 18 pills a day. Ahmed’s medical team beseeched her not to Google NMOSD; she ignored them and found what she characterizes as “some of the most horrifying things on the internet.” Just as interesting to her was what she didn’t find: a single definitive source of information about the disease or a celebrity who had taken on the responsibility of drawing awareness to it.
Even as she ailed physically, Ahmed was far from despondent. “My thinking was basically, ‘I’m not sure why this happened and I’m angry and sad about it, but I have to believe there’s a reason for it,’” she says. She founded The Sumaira Foundation, a nonprofit designed to raise awareness of NMOSD and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), shortly thereafter.
“There was this sense of ‘I have to do something,’” Ahmed says. In keeping with her usual DIY approach, she kicked off the project by Googling “how to start a foundation.”
Eight years later, The Sumaira Foundation has gone global, expanding into Canada and Europe and translating its digital content into 10 languages. Ahmed attributes some of the recent growth to the pandemic, noting that it forced the organization to take a hard look at how it engages with its numerous communities.
“Before COVID, I was focused on a smaller periphery,” she explains. “We needed to make sure that chronically ill, already isolated patients didn’t feel even more isolated during this crazy time. Pivoting to the virtual setting made all of us realize how small the world actually is.”
Ahmed has ambitious goals for the foundation. Through the first half of 2022, it had funded some $500,000 in research grants. She hopes to grow that sum tenfold within the next decade.
On the personal front, Ahmed has fewer set-in-stone plans. After relapsing eight times during her first two years with NMOSD (“I’ve been on 13 different biologics, all of which come with a different set of side effects, which is as fun as it sounds,” she cracks), Ahmed has been in remission for four years. She isn’t out of the woods; in early September, she returned to the hospital to be treated for kidney stones. But she reports that, on a day-to-day basis, she feels physically and mentally well.
Her job helps. “You know what they say: When you love what you do, it doesn’t really feel like work,” she says. “Outside the foundation, I’m a pretty normal person. I watch The Real Housewives. I read.”
Ahmed’s only regret is that she isn’t able to perform the way she once did. “For a long time after I got sick, I kind of knew in the back of my head that I had to part ways with my career aspirations as an actor and dancer. I’ve been grieving that since the beginning of all this and probably didn’t stop grieving until recently,” she says. “When I tried to dance the way I used to, it was just so painful on my body.”
However, the silver linings are considerable. Ahmed recently appeared in an episode of PBS’ Medical Stories that focused on NMOSD, and is currently filming and producing a docuseries on the patient community and her own experience.
“I’m sort of back in the spotlight now, but in a more meaningful way through the foundation,” she continues. “To get to be with all these wonderful stakeholders all over the world, it’s just so magical. The universe is so incredible, right?”
“Besides,” she adds with a guffaw, “I’m too old to be an actor now.”