There’s More Hope for Treatment Now Than When I Was Diagnosed
I still remember the feeling of despair I had while sitting on a cool stretcher in the neurologist’s office, after hearing devastating news about my health.
The neurologist admitted that he had no idea what I had, but he assured me it was a severe condition. I wondered why after so many tests and hospitalizations no one could figure out what was wrong with me. The cycle of hospitalizations just continued over and over again.
I had so many questions. What should I do? Which doctor can help me? I thought I was a medical outcast.
Now, I understand that a story like mine happens to someone every day somewhere in the world. In Europe, for example, only 6% of rare diseases currently have treatments. In the U.S., that number is only slightly higher. If this is the situation in developed countries, I can only imagine the additional hardship people face in developing countries.
When I had my first neuromyelitis optica (NMO) attack, it was difficult to diagnose because there wasn’t much information about it. After searching for a diagnosis for a year, I was misdiagnosed with multiple sclerosis. Three years later, I was finally correctly diagnosed with NMO after testing positive for anti-AQP4 antibody, one of the criteria for an NMO diagnosis.
Getting correctly diagnosed certainly wasn’t easy. After that, my next step toward recovering my life was to find proper treatment. To my surprise, I couldn’t find an approved medicine for NMO at the time, although I did discover a treatment that had been approved for a different medical condition, but was helpful in treating my NMO.
A few clinical trials also were going on at the time, but nothing had been approved specifically for NMO. I initially thought I could be in real trouble. I remember wondering why a company would be interested in developing a medicine for just a few patients. Maybe it simply wasn’t profitable.
I felt a little better when I heard about the Orphan Drug Act of 1983, which created financial incentives to encourage companies to develop new drugs for rare diseases. Also, the National Institutes of Health had begun an effort to develop new treatments, called Therapeutics for Rare and Neglected Diseases.
Thanks to these efforts to help the rare disease community, NMO patients now have a few approved medications. This helps to reduce my stress, as I now know that if at any moment my current treatment stops working, other options are available.
I haven’t switched from my unapproved medication to any of the approved ones yet. But it is reassuring to know that I have options. Right now, I’m evaluating all of this as I consider changing treatments. I could also wait a couple years for one of the medications currently under development, which might work better for me. Time will tell.
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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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