Columns

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…

If I asked a random person on the street if they think I have a disability, their answer would probably be no. However, one of the effects of my latest neuromyelitis optica (NMO) attack is that I do not entirely feel my legs. Additionally, I can’t walk long distances.

Every month for the past 13 years, I’ve had a standing date booked in my calendar. The third Saturday of each month is blocked off for three hours of self-care in the form of a support group meeting. I’m the token neuromyelitis optica (NMO) patient in a group with seven…

This column is a message to all of the patients currently undergoing an extended hospital stay. I know it is easy for people to share encouraging words when they aren’t the ones in a difficult situation. But let me just say that I know what you are going through. Unfortunately,…

I can trace my first neuromyelitis optica (NMO) symptoms to when I was 12 years old. I’d be walking down a flight of stairs, and for a split second it was as if a switch had been thrown, cutting off communication between my brain and my legs, and I’d fall…

When I was diagnosed with neuromyelitis optica (NMO) in 2012, the U.S. Food and Drug Administration (FDA) hadn’t yet approved any medications specifically to treat this disease. However, doctors could select various therapies to help patients prevent or deal with attacks. When NMO patients had an attack, doctors treated…

I was born and raised in Cuba, playing outside, running, and enjoying my friends. In my healthy teen years, I didn’t think I’d ever become chronically sick, much less stop walking. However, everything changed when I watched a movie about a boy named Lorenzo who suffers from a degenerative…