In 2014, Bollywood triple threat and COM alumna, Sumaira Ahmed, was diagnosed with sero-negative neuromyelitis optica (NMO)—a rare autoimmune disease. Ahmed channeled this hardship into passion and determination by creating The Sumaira Foundation for NMO. Ahmed implements the confidence and skills she acquired at BU into all her endeavors.
Shira Levin: In the video, Illuminating the Darkness of Neuromyelitis Optica—The Sumaira Foundation, you say your life changed overnight. Can you elaborate on this?
Sumaira Ahmed: After college, I started working in ophthalmology [treatment and study of eye diseases and disorders]. I was doing public relations, marketing, business development, advertising—the whole shebang. I was perfectly healthy. Three weeks before I turned 25, I lost my vision—randomly. I was blind.
SL: Were you terrified?
SA: Oh my God, yeah. I was put in the hospital and had MRIs and lumbar punctures. Within a month, doctors were able to diagnose me with Neuromyelitis Optica. I started chemotherapy when I was 25, and have been doing it since.
SL: After a multitude of tests and treatments, how did you feel when you were finally diagnosed with NMO?
SA: I was scared, especially because I knew how rare it was. I realized I was in Boston at MGH [Massachusetts General Hospital], one of the best hospitals in the world. I had an all-star team, but it was unchartered territory.
SL: Did you feel any sense of relief when your doctors put a name to the disease?
SA: To some degree, yes. But then when I started looking into it, I thought, “Oh my, I don’t want this!” I feel like I’m still in limbo with my disease. I have lost permanent vision in my right and left eyes. I just had treatment last night.
SL: What sparked your motivation to create your foundation?
SA: Two days after I was diagnosed, I was going home from the hospital in an Uber. I remember thinking, “This happened for some crazy weird but good reason—I just don’t know why yet.” I looked around the Internet and realized there wasn’t much out there. The only other organization The Guthy-Jackson Charitable Foundation does research and development for NMO, but nothing about awareness. I wanted everyone to know about this, so I started one myself. We now have 15 people on board, and four doctors from the Harvard network. It has grown into something awesome.
SL: What has been your most difficult experience while battling NMO?
SA: I think I’m desperate to be in denial, but painfully aware. People are always on my case about slowing down, but I don’t want to be sick. I don’t want this to stop me. I am also frustrated I can’t do more for other people—almost like survivors’ guilt. There are so many patients who are debilitated, in wheelchairs, can’t work. I wish I could do more for them, but I am trying.
SL: Do you believe your COM PR education provided you with the tools to build such a successful, inspirational foundation?
SA: Absolutely, no question. I give a talk to COM 301 students at BU every semester, and this question comes up every time. COM taught me how to be a hustler—to not be shy. If you want something, go after it and ask for it. I don’t know if I was like that before BU. COM equipped me with the right knowledge, experience, outside-of-the-box thinking, and confidence.
SL: You say you are a firm believer that knowledge is power. What does this perspective mean to you?
SA: Knowledge is power in the sense that if more people know about it, more people will donate and they could find a cure. Patients will also feel less socially isolated.
SL: How do you think it has applied to your life thus far?
SA: By nature, I am a very curious person. I ask a lot of questions. Personally, knowing more about my disease helps me be a better self-advocate. Being a self-advocate is huge—especially when it comes to autoimmune diseases where there are so many question marks.
SL: You were even Miss Bangladesh USA!
SA: In spring 2015, I was going through some aggressive chemo. It was a rough time. Given my background in acting and dancing, I loved the spotlight. I loved the glamorous lifestyle. When I got sick, all of that changed for me. Miss Bangladesh USA started campaigning in the beginning of 2015. Somebody nominated me, and I thought, “Look at me. I look awful.” But [I] was like, “What the hell. Let’s see what happens.” It was a national contest and somehow, I won. It was a wonderful experience and a great way for me to talk about NMO on a larger platform.
SL: Does NMO inspire the content for your lifestyle blog, “Flower: The Converted Bostonian?”
SA: In the beginning, I wrote about restaurants, clubs, travel, relationships, friendships. I didn’t write about me. I was advising people and making observations. As a reader, you couldn’t tell who I was as a person. Then I got sick. I felt lost and had a hard time processing. One night, I wrote what happened to me and posted the link to my Facebook. In 12 hours, my blog had 10,000 hits. People were listening! Maybe I had a voice. It then turned into an online diary where I was talking candidly about my struggles. I learned many patients found me through the blog.
SL: What are you doing now? Where do you see yourself in 10 years?
SA: I do marketing and business development at the Brigham Women’s Hospital, run my foundation, manage my health, am enrolled in a program at BU Questrom [School of Business], have a pretty active socially life, and travel often. I am also writing my memoir.
SL: You’re Superwoman!
SA: And I’m trying to date! In 10 years? Who the hell knows? I would never have expected my foundation to be where it is in just three years. I used to try to predict the future and plan far in advance. Now, I take one day at a time. I focus on whatever is in front of me.
The Sumaira Foundation: http://www.sumairafoundation.org.
Shira Levin, Staff Writer
Shira Levin is a junior majoring in advertising. Born and raised in the City of Angeles, Shira is your typical West Coast native attempting to make it through another East Coast winter. Spot her around campus in oversized sunglasses, exercise leggings, and blacked-out Nikes.