Patients and Their Families Make the Best NMO Advocates
Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m glad the film was able to raise awareness of Lorenzo’s disease, adrenoleukodystrophy.
Neuromyelitis optica (NMO) patients, their caregivers, and their families all play fundamental roles in increasing awareness about this rare disease. We know firsthand what it’s like to live with NMO.
My humble contributions have included writing a blog on WordPress years ago, running a Facebook page, and now writing this column for Bionews, the publisher of Neuromyelitis News. Also, every time I have the opportunity, I talk and exchange information with other patients at the infusion center. Some patients know a lot about the disease, while others are still confused about the details.
For example, a patient at a Miami infusion center once told me that her multiple sclerosis (MS) worsened so much that it turned into neuromyelitis optica (NMO). I was petrified by what I heard. I explained to her that MS and NMO are two different conditions with two different treatments. I think she must have initially been misdiagnosed with MS, and the doctor later discovered that she actually had NMO. This happened to me, too.
A good example of a knowledgeable patient who does a lot for the NMO community is Sumaira Ahmed, who created The Sumaira Foundation for NMO after being diagnosed with NMO. What a selfless act! After my diagnosis, I barely had the energy to breathe, let alone gather my strength to create a foundation. God bless Sumaira’s heart.
Her foundation provides support for patients and caregivers, raises awareness, and fundraises to help find a cure. The website offers information about therapies, symptoms, patient testimonials, and research.
Sumaira recently celebrated the foundation’s seven-year anniversary, and I had the honor of being invited, along with another patient, to share my testimony. I was initially a little intimidated to talk in front of so many people, but I thought it was important to share how people with NMO struggle, especially if they are misdiagnosed or undiagnosed.
Many NMO patients don’t have the same luck that I did. Many die or become paralyzed before they can access proper treatment.
Other patients are raising awareness too, including fellow Neuromyelitis News columnist Lelainia Lloyd. On behalf of the NMO community, thank you!
Bill Guthy and Victoria Jackson, the parents of an NMO patient, are a remarkable example of how families can raise awareness. Their daughter, Ali, was diagnosed in 2008, the same year that my symptoms started. Following Ali’s diagnosis, her parents founded the Guthy-Jackson Charitable Foundation. I am glad they used their knowledge, experience, and resources to create this foundation.
When I originally started looking for NMO information, I found medical papers that took me a long time to understand. The Guthy-Jackson Foundation was the first resource that provided information that was understandable for someone without a medical background. Later, when The Sumaira Foundation was created, I thought the same.
I’ve used the resources published on both of the foundations’ websites to assist other patients who contact me. Many patients’ chief complaint is finding a neurologist who knows about NMO. I’ve used a doctor-locating tool that both foundations have on their websites. Doctors are not available in every country, but I’m amazed by how many countries are included.
I am so thankful that I am not alone in the NMO world. I am happy that many people are raising awareness of this disease. Awareness ensures that the sad story of misdiagnosis or no diagnosis is repeated less often.
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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 provider 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.
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