Health and Wellness
02.27.2025
A Patient’s Journey to NMOSD Diagnosis & The Importance of Advocacy
A Patient’s Journey to NMOSD Diagnosis & The Importance of Advocacy
Meet Myles Dew. His journey with neuromyelitis optica spectrum disorder (NMOSD) began with unexpected symptoms that led to multiple ER visits before receiving the correct diagnosis. In this video, Myles shares how self-advocacy, persistence, and awareness played a key role in getting the right medical answers—and why patients and healthcare providers alike need to recognize the signs of NMOSD early. Watch his story below to hear firsthand what it means to navigate life with a rare disease.
Myles Dew Neuromyelitis Optica Spectrum Disorder Patient
My name is Myles Dew. I'm from Toronto, Canada. I've been diagnosed with an extremely rare disease, neuromyelitis optica spectrum disorder, NMOSD, often just referred to as NMO.
My diagnosis I feel, was extremely quick relative to what I've read. The key being early diagnosis. I got into very good Toronto hospitals and got diagnosed, I feel early through the awareness of good doctors. That's been my experience to date.
Yeah, fascinating symptoms that were totally away from where the actual problem was with me, my main issues were stomach, nausea, vomiting, and other stomach related issues.
Rare diseases like this, I feel you have to arm yourself with the knowledge. You have to listen to your body and you have to keep asking questions.
I had to advocate myself, but you know, for me, I sort of had no choice. I was in and out of ER. It took one doctor to say, we need to go and look in your brain where the disease was affecting me. But it was certainly, it was in my brain, lower brainstem.
Yes, absolutely critical to get diagnosed early. Oh, absolutely critical to stop irreversible damage. I’m a positive kind of person. I sort of use the expression, grab the bull by the horns and say, we got to deal with this. So, I navigate this, with the best of my ability, to be positive and find the right avenue to take.
I reflect back on my life. I’ve been fortunate. I have family, I have friends, deep friends, so I try to find a positive outlook on all aspects of it and not feel like a victim and, just try and be positive going forward.
I have to listen to my body and realize that it’s time to not push myself. But find the balance of taking it to, certainly not the limits, but taking it to a comfort zone and not stressing about the small stuff. So, finding the right balance and trying to remove stress from my life to the best of my ability.
There’s no question living with a disease, a rare disease, brings absolute uncertainty to my life.
Awareness to a disease like this is key. I mean, I was totally unaware of the disease until I got it.
For the community, medical field, I feel that awareness to a disease like this is key to early diagnosis for patients.