quality of life

I will always love the feeling of a good bass line, the way the sound escapes concert speakers and vibrates through my entire body. It’s poetic justice that this feeling can now trigger painful spasms, a symptom of neuromyelitis optica spectrum disorder (NMOSD). My husband (then fiancé) and I had…

Like many Canadians, I grew up watching curling, a beloved national sport that helped make the long prairie winters more tolerable. I’d watch with my grandparents and cheer for the teams that made it to the Olympics. Curling transfixed me with its elegant combination of skill, athleticism, and drama.

As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes: a family doctor a neurologist and neuro nurses a rheumatologist three pharmacists a home infusion nurse an immunologist three endocrinologists a physiatrist a gastroenterologist…

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

Six months ago, a blood test revealed that I had developed a rare side effect — a condition called hypogammaglobulinemia — from a biologic I’ve been on for five years for neuromyelitis optica (NMO) as well as two types of arthritis.

My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the feeling in my arms and hands. As an artist, this was utterly devastating. My manual dexterity…

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…

As a neuromyelitis optica (NMO) patient, sometimes I am under the impression that I am at a disadvantage compared with my healthy co-workers. Some of the daily routines that they complete effortlessly are a struggle for me. For this reason, at the end of my workday, I often feel as…