Living Well with NMOSD

When you live with a rare and debilitating illness, life is full of so many challenges that it can be difficult to maintain a positive attitude. People who live with neuromyelitis optica spectrum disorder (NMOSD) – an autoimmune disease that attacks the optic nerves and spinal cord – face accumulating symptoms that can lead to blindness, muscle weakness, paralysis and more. Because the condition is rare, affecting up to 15,000 people in the United States and 200,000 people worldwide – most of them women – people living with NMOSD often have to persist to find the right diagnosis and treatment, becoming strong advocates for themselves and learning to adapt, finding ways to live their lives to the fullest.

And yet, as confusing and difficult as their diagnosis may be, many people with NMOSD meet these challenges and many more, refusing to let their condition and disabilities define who they are. They find communities in person and online of others who have NMOSD to share information and experiences, empower each other to work with their healthcare provider to advocate for what matters to them, and celebrate every day successes in their lives.

We asked three people living with NMOSD to share their journeys with the condition, from getting the right diagnosis and treatment to finding the support they need to not only cope with the condition, but to achieve their dreams. All of these people have been active on social media and in advocacy groups, helping to empower others living with NMOSD, letting them know that they are not alone.

Aldelly: Connecting with Others Living with NMOSD

Aldelly shares her journey with NMOSD and underlines the positive impact her online community has had on her experience with the condition.

Aldelly always liked to wear heels – “even to the supermarket,” she says. But in 2013, when she was 23, she began to have difficulty walking in them. “My foot wasn’t working right.” She began to experience pains in her body, fatigue and bladder problems. When Aldelly saw her doctor, every symptom got explained away, but Aldelly knew something was wrong. “You know your body best,” she says.

Advancing the Science of NMOSD

Eventually, she saw a neurologist who diagnosed NMOSD. At first, Aldelly, who had two small children, a job, and a new house, denied her diagnosis. “I just didn’t have time for it.” She pretended nothing was wrong, making excuses when she limped. Then, after a fall, she decided to disclose her disease to her friends and wider social media community. “It allowed people to understand me, and for me to be myself.” That changed everything for her. “People just started reaching out,” she says. “That’s helped a lot.”

She began writing about her experiences with NMOSD, “talking about things that people don’t talk about,” such as incontinence and intimacy. Bilingual in Spanish and English, Aldelly engages with people living with NMOSD all over the globe. She says that the key to maintaining her positive attitude is being open-minded about having an adaptive lifestyle. “If you don’t adapt, you’re going to stay stuck in a dark place,” she says. After walking with a cane, and then riding a wheelchair, she now zips around on an electric scooter. “I call it my fab mobile,” she says. She also credits her family and children with keeping her spirits up. “Seeing my children’s happiness just fills me up,” she says. “That and putting on a little red lipstick can get you out of a funk.”

Christine: Finding New Purpose

Christine highlights the obstacles she overcame that were caused by NMOSD and encourages others to celebrate the small victories in order to live well with the condition.

From the time Christine experienced her first symptoms of NMOSD, it took four years to be correctly diagnosed. Her doctors initially diagnosed her with multiple sclerosis (MS), which presents similar symptoms, but the treatments never worked. Finally, as she began to lose her vision, a specialist gave her the difficult diagnosis of NMOSD. “To live well with NMOSD, it’s OK to grieve the loss you have experienced, but you also have to do the best you can with the cards you’ve been dealt and choose to participate in life,” she says.

Christine began working with vocational rehabilitation specialists, who taught her to read Braille, use a cane for the visually impaired, and regain some independence. She received a master’s degree in creative writing, and rediscovered an old passion – cooking. “I went from not being able to make a sandwich to making an edible one, then cooking an egg, then cutting an orange, then preparing an entire Thanksgiving meal,” she says. “I would celebrate the small victories.” Christine went on to become a chef, participating in and winning an American competitive cooking reality TV show, where she was the first blind contestant. She also opened two Houston restaurants, The Blind Goat and Xin Chao. Since then, she has curated a menu for the United Nations’ “Dine in the Dark” event for low vision and blindness advocacy, and won the American Foundation for the Blind’s 2014 Helen Keller Personal Achievement Award. “I still face challenges every day,” Christine says. “But with the support of my family and friends, I found a new purpose in life. I think NMOSD built a stronger character in me.”

Tamanika: Advocating for Yourself

Tamanika discusses the importance of advocating for yourself in order to find an accurate diagnosis that will lead to identifying proper care.

Tamanika’s first NMOSD attack was in 2003, on her first date with the man who eventually became her husband. “All of a sudden the world was spinning, there was pain in my eye, and I was unstable on my feet,” she says. “I was seeing double of him, though, and it was fabulous.” Her doctor told her it was vertigo and would go away – but it didn’t. Then she lost hearing in her left ear. When Tamanika saw a neurologist, he diagnosed MS, but despite the treatment she was getting worse. She switched neurologists, but had a similar experience. “Now we’re three years into the disease, and I went blind in my right eye, right around the time I had a child,” she says.

Her brother, who is in the medical field, went with her to the doctor and felt that her symptoms didn’t line up with the MS diagnosis. He advised Tamanika to see yet another neurologist. “This was my third neurologist in seven years,” she says. “But I wasn’t going to quit advocating for myself until I found someone who listened to me and gave me a diagnosis that made sense.” Right away, the new doctor said, “This is not MS.” He called it “MS on fire,” which was a name for NMOSD in those days. Tamanika, then 28, had finally found a doctor who could not only treat her appropriately, but listened to her questions, and asked how he could help her make her life less stressful.

Though Tamanika couldn’t work a full-time job, he suggested that she help get the word out about the condition. She found the Sumaira Foundation -- a NMOSD advocacy organization -- and became an ambassador. “I always loved working, and this was work I could do to make a difference, bringing awareness to people about the disease,” she says. She began posting to social media and fundraising, focusing on empowering others living with or affected by the condition to advocate for the care they need. “I like this work because it’s bright and shiny, not drab and depressing. We’re bringing light to the disease.”