Why knowledge is power following an NMOSD diagnosis

_“I grew up in a world where disability was normal. I had people in my life who were deaf, who had survived multiple strokes, and who had heart conditions so severe they could hardly leave their house. I never thought to pity these people, instead I grew up loving and accepting them for the individuals they were. Their disabilities never seemed like a deficit to me. How could they, when that person remained so potent and capable of so much?

I’m grateful that I had these early experiences and context to teach me that disability is just another state of being on the continuum of what it means to be human. My youngest grandson will only ever know me as someone with a disability and I hope he learns the same lessons from me that I learned from those early role models in my own life. Disability doesn’t change who we are. It’s just something that happens to us. And then we find ways to get on with it.

In a way, I’ve been living this lesson my whole life, even well before I had a definitive diagnosis or any understanding of my own health challenges. I was born hearing impaired, but it went undiagnosed for decades. As a child, I had periodic attacks where my body wouldn’t cooperate. I’d fall down the stairs one day, fall off my bike the next. I experienced fatigue and overwhelming nausea; sometimes I spent months with persistent pain radiating down my right arm. In the face of all this, I found ways to cope for decades without ever realizing that was what I was doing. I just kept moving forward.

Then, in 2007 — after a relatively minor fall on my front porch left me unable to feel anything from my collarbone down — I was referred to a neurologist and misdiagnosed with multiple sclerosis (MS). This misdiagnosis wreaked havoc on my health. I spent five years cycling through different MS treatments, including chemotherapy. Not only was I failing to see any improvement from running this gauntlet, I was getting worse. I was in pain every day and my mental health was deteriorating quickly. 

It wasn’t until 2012 that I finally got an accurate diagnosis: neuromyelitis optica, or NMO. As any rare disease patient will tell you, having the true name for what I was dealing with changed everything. Knowledge is power in the world of rare disease. The last 20 years have seen an explosion of new research and new medications for this disease, and so this is a very hopeful time to be an NMO patient. And I, personally, was very fortunate to get diagnosed before my own disease had progressed too far.

As my own quest for empowerment and accessibility as a newly-minted NMO patient began, I quickly realized that the fight was bigger than just me. Before I knew it, I became a full-time advocate, speaking on panels, writing a column and hosting a podcast. It’s a bit wild. No little kid ever says, “When I grow up, I want to be diagnosed with a rare disease and become an advocate.” It’s something you do out of necessity.

And advocacy is necessary. The rarity of these diseases can make you feel invisible. But when there’s awareness, education, access, funding, social programs, and well-supported research, the outcomes can be incredible for the real people living with these diseases. Thanks to treatment, I’ve been relapse-free now for four years – and that gives me the confidence I need to live well and be unapologetically me. That means everything to me. Honestly, I never would’ve thought it was possible, but with the right management and the right care team, this disease can be controlled. I believe that every patient deserves that chance.

We’re mothers, we’re fathers, we’re spouses, we’re employees, we’re neighbours. We’re people with value, contributing to society in so many beautiful ways. We have lives we want to get on with.”

Lelainia Lloyd (Canada) and Debbie Leticq (Australia) co-host a podcast called NMOSD Your Way. NMOSD Your Way brings together clinicians, researchers, and fellow patients to have important conversations about how to live your best life following a life-altering diagnosis. You can listen to NMOSD Your Way on Spotify or wherever you listen to podcasts. The viewpoints expressed are those of the people speaking and not of Alexion AstraZeneca Rare Disease.

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This initiative was supported by Alexion AstraZeneca Rare Disease.