Moving Forward After an NMO Diagnosis
A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could about the illness.
At the time, there were no readily available brochures or informational handouts that doctors could offer newly diagnosed patients. The U.S. Food and Drug Administration (FDA) hadn’t even approved any medications specifically for the treatment of NMO.
To say I was terrified by the results of my internet search is an understatement. The first thing that caught my eye was the prognosis. According to a review article published in 2019 in Clinical Medicine Journal, one-third of untreated NMO patients will die within five years of their first attack. It was heartbreaking to try to process the possibility that my daughter wouldn’t make it to her 16th birthday, her high school graduation, or her wedding day.
Many different thoughts went through my head during that hour of research. I can’t even recall what I read. I had so many questions for Bella’s doctors that I didn’t know where to begin. I desperately needed reassurance, answers, and hope for my daughter’s future.
I quickly learned that NMO researchers are as fierce as the warriors fighting the disease. Within just a few hours of Bella’s diagnosis, we were contacted by multiple researchers hoping to enroll her in different studies so that they could learn more about the illness while following Bella’s progress. We didn’t hesitate to join, because I knew that the research would help not only Bella, but others fighting NMO.
I was determined that Bella would outlive the five-year mark. I leaned on my faith tremendously and repeatedly told myself and everyone else that God always has the final say. I then set out on a social media quest to find other NMO warriors and hear their stories of strength, bravery, and courage.
It didn’t take long for me to find others and start exchanging messages. One night, I received a message from a patient introducing me to Sumaira Ahmed, founder of the Sumaira Foundation for NMO. I was blown away by everything Sumaira had accomplished, like becoming the first Miss Bangladesh-USA in 2015 and aspiring to be a Bollywood actress one day. I was moved by the fact that she had founded the organization to illuminate the darkness of NMO.
I reached out to Sumaira with Bella’s story, and she responded almost immediately. She offered her full support and promised that Bella would never go through NMO alone. Sumaira has kept this promise, and we are grateful for her friendship and advocacy.
I met NMO warriors who had started showing signs of the disease in their early teens and were now in their 30s or older. Every story inspires me and makes me optimistic that Bella will live a full life and grow old, like she often says I am.
Meeting new patients and hearing about their experiences has been touching, painful, and powerful. Because others have been willing to share their stories, I now feel more knowledgeable asking doctors questions, and I’m confident explaining Bella’s symptoms.
While we rely 100% on science and doctors to treat Bella and help her survive, nobody knows this illness better than the warriors and caregivers who face the illness every day.
I am definitely not an expert on NMO, but I’m proud of everything I’ve learned by asking questions, being involved, and connecting with others who are fighting beside us.
The FDA has now approved three medications for the treatment of NMO, and we’ve built lifelong friendships with other warriors. Bella’s future is looking as bright as the shining sun.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).