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When 25-year-old Sumaira Ahmed got a call from her doctor’s officelast May, she was shattered by the troubling news. “You don’t have cancer,” said a voice from the other end.
In normal circumstances, this would be considered good news—but not for this Boston resident.
“I was lying on the floor, broken, crying over why I don’t have cancer,” Ahmed said.
Exhausted by her prolonged illness and the uncertainty that came with it, Ahmed hoped for a cancer diagnosis. “Doctors said they would be relieved if it was cancer, as there is a definitive treatment for my disease,” Ahmed said.
Ahmed, who was newly crowned Miss Bangladesh USA 2015, was all set to make her first visit to Bangladesh after winning the title. She was looking forward to this trip as a much-needed break from her illness, but just as she visited her doctor for a final go-ahead, she was taken aback. “I was told my blood levels were near death. I had lost weight, and doctors suspected that I had cancer, almost one year after I was being treated for a rare illness for which there was no cure,” Ahmed said.
In summer of 2014, Ahmed, who worked as a director of network development at a premier laser vision correction center in New England, lost vision in her right eye. “I was told that I would gain my vision back in three months. Instead, I lost vision in both my eyes and was declared legally blind,” Ahmed said. “I was rushed to the hospital, where I became a lab experiment for doctors.”
After a series of tests, she was diagnosed with a little understood, incurable and rare autoimmune disease, Neuro Myelitis Optica (NMO). The uncommon disease affects the spinal cord and optic nerves.
According to National Institute of Neurological Disorders and Stroke (NIH), NMO afflicts as few as one to two people per 100,000 worldwide. Such rare is the condition that it is classified as an “orphan disease” (a condition that affects fewer than 200,000 people nationwide). Currently, there isno cure for this autoimmune disease, but its symptoms can be treated.
NMO, which causes blindness, paralysis, and seizures, is often misdiagnosed as Multiple Sclerosis (MS). Ahmed too was suspected to have MS.
“Doctors concluded that I had NMO after ruling out other diseases,” she said. “I was put on medication, given chemotherapy and was asked to hope for the best.”
It is during this time in August 2014—when Ahmed was hospitalized—that she realized how lonely she was in her battle with a disease of which she couldn’t even remember the name.
“My family and friends have been there for me, but I almost wish I could talk to someone who also experienced a similar situation to see how they dealt with it. There really isn’t much out there,” Ahmed said.
The lack of information about the disease prompted her to launch the Sumaira Foundation, a nonprofit that strives to increase global awareness of the disease, fundraise for research and provide support and resources to patients and their caregivers.
“Lying in my hospital bed, I realized that I cannot live in negativity. The entire experience changed my life. I wanted to make this a beautiful thing. Maybe NMO happened to me because I am the perfect person to advocate and spread awareness about the disease given my background in public relations and the exposure to public platforms,” she said.
Although her condition improved and she regained vision in her left eye, she took it upon herself to spread awareness about the disease. Ahmed is set to host her second fundraiser, Light [up] NMO with Linked [in], on Thursday, August 20 in New York City at the Empire State Building.
Partnering with LinkedIn NYC, the cocktail event will be attended by doctors, patients, well-wishers and supporters to create awareness about the disease. Ahmed, who is now in her remission phase, will be supporting the plight of those who experience permanent effects of the disease.
“At the event, there will be two other NMO patients who are leftdisabled with the condition,” Ahmed said. “They will speak about their experiences with the disease.”
Ahmed will collect funds from the event, directing them towards her next project that aims to create medical guidelines for testing NMO.
“Currently, there is no effective diagnostic procedure for NMO patient,” Ahmed said. “Due to the rarity of the disease, a lot of physicians are not aware of the condition.”
Because of this, Ahmed wants to be sure the medical community has the ability to properly diagnose NMO cases in the future. “The idea is to create a guideline for diagnosing NMO,” Ahmed said. “We are also working on a list of NMO specialists that patients can go to in their region.”
When asked Ahmed what advice she would like to give to NMO patients and their caregivers, here’s what she had to say: “I can’t take away their pain or struggle, but if there is one thing I could give advice on, it is to focus on each day and try to troubleshoot your mind with positive thoughts. Try to find your inner peace and happiness.”
By Jinal Shah
Original article can be found here: http://www.india.com/wellness-and-beauty/miss-bangladesh-usa-seeks-to-raise-awareness-of-a-rare-disease-this-thursday-in-new-york-city-503210/