Lelainia Lloyd,  —

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…

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…

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…