Author Archives: Lelainia Lloyd

Chronic Pain: The Elephant in the Room

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,…

The Struggle Is Real: How I Cope With Patient Burnout

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…

Pharmacists Are the Backbone of My Care Team

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…

For NMOSD Awareness Month, Let’s Separate Fact From Fiction

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…

Looking Back on Our Last Day of Normal

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…

Finding the Peer Support Team That Changed My Life

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…