Daily living

My disability, caused by damage from neuromyelitis optica (NMO) attacks, often prevents me from fully participating in social events, outdoor events, and other activities. However, I still choose to participate in some of them, rather than not participating in any. This isn’t to please others, but rather to avoid…

One of the most difficult aspects for me of living with neuromyelitis optica (NMO) is dealing with chronic pain. It’s what most affects my quality of life, but in my opinion, it’s also the least addressed and treated issue. In 2012,…

In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant treatment, takes a lot of energy. I must attend numerous appointments…

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.

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…

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…

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…

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…

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.

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…