She Turned a Devastating Diagnosis into Hope
Above photo by Abhishek Tiwari on Unsplash. Other photos courtesy of Sumaira Ahmed
“Illuminate the darkness.”
Maybe it was the pain, or perhaps the morphine, but these words rang in Sumaira Ahmed’s ears like an epiphany. Lying in a hospital bed in early August 2014, Ahmed (’09, COM’11) was getting to know darkness all too well. In July, the dancer and aspiring actress woke up nearly blind in her right eye, sending her to the emergency room for a weekend only to emerge with frustratingly little information. A few weeks later, one week after her 25th birthday, Ahmed suddenly lost vision in both eyes, went numb in half of her body, and collapsed at work in Boston. Countless needles, scores of scans, and 20 vials of blood later, an entourage of doctors came to Ahmed’s room at Massachusetts General Hospital to deliver a frightening diagnosis: neuromyelitis optica spectrum disorder (NMOSD), a group of rare autoimmune diseases that attack the optic nerves, spinal cord, and, less frequently, the brain.
“Am I going to die from this?” Ahmed asked the doctors. No one could give her a straight answer. When she got home, she Googled the disorder—something doctors had advised her not to do—only to learn many who are diagnosed with NMOSD will not be alive five years later.
Lying in that hospital bed with this unthinkable new reality weighing on her, Ahmed knew she wanted to be a part of bringing light to the darkness of a disease that afflicts just one in 100 million people worldwide. Discharged with a battery of prescriptions, several outpatient appointments, and a calendar full of chemotherapy infusions, she felt overwhelmed and alone. “I asked the discharge nurse, ‘What about my heart and my mind? How do I meet another patient? Is there a support group meeting? Is there a celebrity with this?’ They couldn’t tell me anything,” she says. “It was terrifying. I couldn’t find what I was looking for as a young woman with a newly diagnosed rare disease. That’s when I decided to start the foundation.”
Almost a decade later, the Sumaira Foundation has raised close to $1 million for new research on NMOSD and served as a connecting point for those living with the disorder. Despite living with permanent vision loss from the disorder (she is now in remission), Ahmed has lobbied governments (including Capitol Hill) and gotten landmarks like Niagara Falls and the Empire State Building illuminated pink to bring awareness to those living with it.
“I’m still trying to figure out this crazy world we live in,” Ahmed says. “But one thing is for sure: that somehow, the puzzle pieces of my life came together perfectly for this. Somehow, it all worked.”
Bollywood Dreams
Ahmed had been singing, dancing, and acting since she was three. The youngest of three girls born to Bangladeshi immigrants in New Jersey, Ahmed was obsessed with Bollywood movies and set her sights on becoming a star. She learned Kathak, a traditional Indian dance, and began performing around the country. She danced at Madison Square Garden for the first time at just 8 years old, and she would do it again at 15. When she was a teenager, Ahmed’s parents put her on a plane by herself to Mumbai, India, to attend acting school. It was a transformational trip. “I was even more sure that this is what I wanted to do,” she recalls. “This was the life I wanted to live: I wanted to perform, I wanted to entertain, and I wanted to pretend like I was someone else all the time.”
When she returned to the US, acting gigs for commercials and music videos began flowing to the effervescent teenager. Her parents pushed for her to pursue acting full-time, rather than attend college, but Ahmed had other ideas.
“I had lived very much a showbiz life until then,” she says, “so I wanted to take a break and go to college, and have a college experience, live in a dorm, drink beer, and do normal things before I couldn’t do normal things anymore.”
Ahmed enrolled in the College of General Studies and later majored in public relations at the College of Communication. She joined Chankaar, BU’s all-female Bollywood fusion dance team, which was the extent of her performing arts experience on campus. She graduated early, in 2010, and took a job doing marketing and sales at an ophthalmology practice in Boston for a couple of years. Her acting dream was very much still alive, so she made plans to try her luck in Los Angeles in September 2014. She’d never get the chance.
‘That’s not my chart’
On July 4, 2014, Ahmed woke up to terrifying symptoms: near-blindness in her right eye and pain and sensitivity on her left side. She went to the emergency room. An MRI showed inflammation on the optic nerves and the optic chiasm, where the optic nerves cross in the brain. She would need to be admitted and begin treatment immediately. “My first reaction was, ‘That’s not my chart,’” she says. “I’m 24, 25 years old. You think you’re invincible, and somebody’s telling you you have a brain issue. You don’t believe it.”
She spent the weekend in the hospital receiving steroids intravenously. She was told she had a small chance of developing multiple sclerosis at some point, and that she was vitamin D deficient, but that her attack was likely idiopathic—a one-off with no apparent cause. Her vision, doctors told her, would return within three months to a year, and she should move on with her life. She tried to do just that.
Two weeks later, Ahmed turned 25, celebrating “like a rock star” and telling only a handful of people about her new symptoms and hospital stay. But one week after blowing out her birthday candles, coworkers at the ophthalmology practice where she worked found her on the floor of her office. A few weeks later, she got the diagnosis. Ahmed’s hands and the left side of her body felt like they were on fire. She frequently lost feeling in her feet. Her eyesight went from 20/20 in both eyes to 20/600 in her left eye and 21/20 in her right eye. She felt disoriented all the time.
In the months that followed, Ahmed learned that precious little was known about the disease she now lived with: diagnostic criteria did not exist, treatments were limited, and misdiagnoses (usually of multiple sclerosis) were rampant. This led to a mortality rate of up to 30 percent after five years, if the disease was left untreated.
“From what I was being told, I didn’t have that much time. I was very, very sick,” Ahmed says. “I didn’t have time to waste, and I realized there was a lot to do. I wanted to do as much as I could in the very short amount of time I had left. In a way, I think it helped me, too, because I was also suffering. I was also scared. I was also looking for answers.”
The search for a community
As Ahmed looked for answers that might lessen her pain and lengthen her life, she longed to connect with others with NMOSD. “I didn’t want to talk to someone who had a genetic rare disease and they became totally debilitated. I can’t relate to that,” she says. “I wanted to talk to people who had what I had, and I wanted to hear their experiences and get their tips and tricks.”
She typed a question into her Google search bar: “How do you start a foundation?” Many in Ahmed’s community of friends, shocked by the suddenness and severity of the disease and its debilitating effects on a bubbly, healthy twentysomething, asked how they could help her create an organization to raise awareness of NMOSD, support research and patient advocacy, and build a community of support among others living with the disease. In 2014, the Sumaira Foundation was born. Ahmed recalls meeting someone else with NMOSD for the first time: “It was very emotional. You feel a sense of relief, because you’re like, ‘I’m not the only person in the world with this, even though it felt like it for a long time.’”
After suffering seven NMOSD attacks, or relapses, in her first year with the disease, Ahmed’s health has steadily improved. Her eyesight has mostly returned, except in the peripheries. (“Just don’t scare me from behind,” she says.) She has been in official remission for four years.
Today, researchers know more about NMOSD—thanks, in part, to the $750,000 the foundation has raised to study the disease. In 2015, an international panel of experts decided on diagnostic criteria for NMOSD, making it easier for doctors to recognize it when they see it. Scientists even discovered in 2017 the antibody for a second, related disease—myelin oligodendrocyte glycoprotein antibody-associated disease, or MOGAD—and diagnostic testing for both diseases has increased significantly. In 2019 and 2020, the first FDA-approved therapies for NMOSD came on the market. Advocacy has “gone from zero to 100,” Ahmed says. In February 2023, she found herself in the White House and on Capitol Hill lobbying members of Congress and Biden officials for increased federal funding to research rare diseases.
Most important to Ahmed, a strong community of NMOSD and MOGAD survivors exists where there was not one in 2014. Each spring, she returns to the stage, but not to dance Kathak or act. Her diagnosis gave her a new vision for her life, one she’s eager to share with others.
In April 2023, she stood in front of 300 patients and families, doctors, researchers, and supporters at her foundation’s sixth annual gala. Guests from as far away as China and Germany gathered at the swanky Newbury Hotel in Boston to raise $375,000, which would be disbursed in $25,000 grants to researchers studying the two disorders. The foundation fell just shy of the financial goal. But Ahmed says the gala achieved her primary goal—bringing a night of fun, and a little light, to those living with a dark and often lonely disease—in a big way.
“I wanted the patients to feel like superstars,” she says. “How often do they have a chance to dress up and be treated like VIPs? I came out feeling very good about that.”