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I was hesitant about getting the COVID-19 vaccine because there is still limited data about its safety and efficacy in people with rare diseases. However, there is also no evidence that the COVID-19 vaccines harm people with rare diseases, including people like me who are immunocompromised. I am still…

In the years since I was diagnosed with NMO, I have had good days, and then bad days when I couldn’t even get out of bed. One summer, I spent 16 weeks in bed, likely due to major side effects from one of the NMO drugs I was taking.

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…

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…

When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early flight to Toronto. I’d been invited to attend a Rare Disease Day celebration hosted by a pharmaceutical company that I’m partnered with. I was…