The View From Here – a Column by Lelainia Lloyd

Lelainia lives on the beautiful west coast of Canada, in Port Moody, British Columbia. Lelainia was diagnosed with neuromyelitis optica spectrum disorder in 2012 after initially being misdiagnosed with multiple sclerosis in 2007. She has lived with NMO since she was 12. Lelainia believes that as patients, our stories are powerful. Her hope is that by sharing her experiences living with NMO, she will help educate, uplift, and inspire the rare disease community.

Steroids: A Necessary Evil With NMO

As someone with neuromyelitis optica (NMO), I am no stranger to steroids. Like most NMO patients, I have a love-hate relationship with them. I jokingly refer to them as “the devil’s Tic Tacs” because of the potential side effects, many of which can be quite serious. On the flip side,…

In the Blink of an Eye, My Vision Was Threatened

When I was misdiagnosed with multiple sclerosis (MS), and five years later, properly diagnosed with neuromyelitis optica (NMO), I was told that a hallmark symptom of each disease was optic neuritis. This occurs when the immune system mistakenly attacks the optic nerve, causing inflammation, which can lead to…

How I Manage My Healthcare Team

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…

The Consequences of Rare Side Effects

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.

How I Learned to Adjust to Loss After My Diagnosis

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…

Heat Hacks for Summer Survival

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…

Thoughts on Being a Disabled Grandparent

In early April, I became a grandmother (Gigi) for the first time. Reaching this important milestone gave me pause. In the months leading up to the baby’s birth, I thought a lot about what kind of grandmother I would be. Phoenyx was born just 16 days after my 50th birthday,…

The Long and Winding Road to Mobility

My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly as I’d hoped. But being persistent paid off when one of my doctors stepped up and…

Encountering Ableism in Healthcare

When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I…

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,…