Rare Disease
03.02.2026
Sumaira Ahmed's path to diagnosis with a rare disease was sudden and frightening — and it changed the course of her life. Having studied public relations in university, she was climbing the ranks as a twenty-something within the field of healthcare communications in Boston. Sumaira also had acting and dancing chops — she had temporarily moved to Mumbai from her native U.S. to study classical Kathak-style dance as a teenager — and she had her eye on a career in Bollywood.
Until one harrowing day, when her dreams were eclipsed. "One week after my 25th birthday, I suddenly lost vision in both of my eyes and feeling in half of my body,"1 she recalls, thinking back to summer 2014. "I was rushed to the hospital after collapsing in my office,” she recalls. What followed was four hours at the hospital for imaging, labs and testing.
Eventually, Sumaira was told she had neuromyelitis optica spectrum disorder, or NMOSD.2 She had joined the estimated 300 million people worldwide who have a rare disease (a disease that impacts fewer than 1 in 2,000 people is considered rare3).
Sumaira was afraid of how the disease would affect her life, including her Bollywood dream. But perhaps the hardest part was the isolation — not knowing whether or where she could find other patients having the same experience. "When I was first diagnosed, I asked the discharge nurse, 'How do I meet another patient? Is there a support group meeting?'" Sumaira remembers. "They couldn't tell me anything. It was terrifying."
As Sumaira quickly learned, NMOSD is a central nervous system disorder that causes inflammation in the nerves of the eye and spinal cord. It occurs when the immune system mistakenly attacks the body's own cells, primarily targeting the optic nerves and spinal cord. The condition can cause blindness, weakness in the legs or arms, painful spasms, loss of sensation and other debilitating symptoms.4
Among the challenges that come with NMOSD is the fact that it's often misdiagnosed as multiple sclerosis.5 (This is common for rare diseases: Healthcare providers may be unfamiliar with the condition,6 which can lead to a mistaken diagnosis — a patient often has to wait for agonizing months or years before healthcare providers accurately determine the cause of their symptoms.7)
Another challenge for NMOSD patients: Symptoms can improve and then suddenly worsen again in what's called a relapse. These relapses can occur after weeks, months or years,8 and over time can lead to blindness and progressive neurologic disabilities.9
Sumaira experienced this unpredictability firsthand. In her first year after diagnosis, she had seven relapses. "The emotional impact of living with a rare disease like NMOSD can be heavy," she says. "It's filled with lots of uncertainty, lots of unanswered questions. And I think as an NMOSD patient, you're always wondering, 'When is my next relapse going to show up and how bad is it going to be this time?'"10
In the weeks following her diagnosis, Sumaira began researching her disease. "As a digitally savvy 25-year-old millennial at the time, I was not satisfied with what I saw on the internet about my disease. It was so challenging to find another patient or read patient stories," she says. "So that's when I decided that maybe I needed to do something about this."
She acted fast. Within two months of her diagnosis, Sumaira launched The Sumaira Foundation (TSF) — a non-profit dedicated to raising awareness of NMOSD and other rare neuroimmune conditions, building support communities, and advocating on behalf of patients.
"When I first started TSF, I was primarily responding to my own unmet needs as a newly diagnosed patient," Sumaira explains. She’s motivated to reassure people who discover they have NMOSD that they aren’t alone. "I maintain this to this day that even if I was able to help one person, that was worth it to me.”
Eleven years later, The Sumaira Foundation has evolved into an international organization, active in at least 32 countries.11 The NMOSD landscape has transformed significantly during that time.12 "A lot has happened in the field of NMOSD over the last decade. What gives me hope now is that there is so much more awareness,” Sumaira says. “For a long time, patients were suffering in silence, and I don't believe that that is the case anymore.
“We have seen major advances in the understanding of, diagnosing and treatment of NMOSD.12 I'm so proud to share that I have been relapse-free for seven whole years.”
Watch Sumaira's story to hear how she's transformed her diagnosis into a mission — and why she feels blessed to do this work. "Leading The Sumaira Foundation is the greatest gift of my life".
Interview with Sumaira Ahmed
I found out that I had NMOSD one week after my 25th birthday, after I suddenly lost vision in both of my eyes and feeling in half of my body.
After I was told that I have NMOSD, my first question was, “Am I going to survive this?”
My name is Sumaira and I’m a patient living with neuromyelitis optica spectrum disorder. I’m also the founder and executive director of The Sumaira Foundation, also known as TSF, and we are an international non-profit patient advocacy organization dedicated to rare neuroimmune disorders. I explain NMOSD to people who don’t know what it is as a rare autoimmune disease that affects the optic nerves and spinal cord.
The emotional impact of living with a rare disease like NMOSD can be heavy. It’s filled with lots of uncertainty, lots of unanswered questions. And I think as an NMOSD patient, you’re always wondering, “when is my next relapse going to show up and how bad is it going to be this time?”
I was in bedrest for several weeks at home. I was not satisfied with what I saw on the internet about my disease, and it was so challenging to find another patient or read patient stories. So, that’s when I decided that, hmm, maybe I need to do something about this.
Within weeks I decided that I was going to start a non-profit organization to, at the very least, raise awareness about NMOSD. And I wasted no time. Within two months of my diagnosis, I launched The Sumaira Foundation.
When I first started TSF, I was primarily responding to my own unmet needs as a newly diagnosed patient. I had so many questions. I was looking for patient education. Slowly, over time, we started just developing programs and initiatives that were addressing all of these unmet needs. And I maintain this to this day that even if I was able to help one person, that was worth it to me. That I wanted to make a difference and make another patient, even if it was just one, feel less alone in this journey.
The Sumaira Foundation as grown a lot over the last 11 years. We’re very proud to be working internationally across borders and time zones. And we’re active in over 32 countries. And we’re so proud to truly be patient-led and patient-powered, science-drive and therapy-agnostic.
What gives me hope now is that there is so much more awareness of NMOSD. For a long time, patients were suffering in silence. And I don’t believe that is the case anymore. We have more awareness, we have patient advocacy organizations, we have approved therapies.
I am so proud to share that I have been relapse-free for seven whole years. Leading The Sumaira Foundation is the greatest gift of my life. I just feel so blessed and grateful to be alive, to be feeling good, and good enough to be doing the work that I’m doing.