The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
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I had been misdiagnosed with multiple sclerosis (MS) when I got married. My husband and I talked about having children, and my doctor at the time told me that pregnancy would not affect my disease. So, we looked into in vitro fertilization (IVF). Although…
Just over a year ago, I started a new biologic. As part of my preparation to begin this treatment, I needed to have a power port placed in my chest because I would be having infusions every two…
It is so important to get a good night’s sleep in order to function well the next day. A good night’s sleep energizes me and makes me feel like my body is being repaired while I sleep. Unfortunately, this doesn’t happen for me every night. Still, I…
As a rare disease patient living with neuromyelitis optica (NMO), I take an enormous number of medications. I have pills for blood pressure, steroid pills to suppress my immune system, and pills to protect my stomach from the side effects of the steroids. I also take a handful…
I have conflicting emotions about the COVID-19 vaccine. I feel dominated by fear, even though I know this vaccine will lower my risk of contracting the coronavirus. On one hand, I know how important it is to be protected against COVID-19. It’s especially important for me for two reasons: I…
In the United States, March is Multiple Sclerosis (MS) Awareness Month, but did you know it’s also Neuromyelitis Optica (NMO) Awareness Month? NMO patients are most frequently misdiagnosed with MS, as these two diseases can look quite similar, so awareness is key. Let’s separate some facts from fiction. “NMO is…
Activities are underway this month to raise awareness about neuromyelitis optica spectrum disorder (NMOSD), a rare progressive autoimmune disorder that affects about 15,000 people in the U.S. Patients, caregivers, and advocates nationwide are flooding social media platforms, garnering state proclamations, participating in educational webinars, and holding fundraisers — all…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
Because there is little information available about certain diseases, many people may be misdiagnosed or undiagnosed. People with rare diseases are at a disadvantage compared with people with well-known medical conditions. Not only do people with rare diseases have limited information, but also their treatment is often not as…
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