My Neuromyelitis Optica Story


Read my story about being a young person with a chronic illness. Living with Neuromyelitis Optica - a rare autoimmune disease.


Highway Of Tears

would like to bring your attention to an issue that exists in a country, that generally many people do not consider as being a place where bad things happen. That country is Canada. The issue? The missing and murdered First Nations women who have disappeared on what is now called “the Highway of tears”.

Better Days Ahead | Suicide Prevention

Yesterday was suicide prevention day, I wanted to write but I didn’t really feel up to it. Since this is an issue everyday, I will write today. Within the chronic illness community it’s very common to feel suicidal. Usually the thought process is that we don’t want to live THIS WAY. If we could be … Continue reading Better Days Ahead | Suicide Prevention

Rarer Then Rare – Niamh’s Reality

I would like to thank candice for sharing my story. I feel like it really depicts who I am! You can read more stories like mine on her blog.

My Reality

Niamh is a sixteen-year-old young lady who has Neuromyelitis Optica. This is an autoimmune disease which effects a person’s immune system, spinal cord and optic nerves. Resulting in paralysis, blindness and cognitive impairment. Neuromyelitis Optica it usually affects middle-aged women, however, Niamh (2018) says “I’m rarer than rare and got it as a child.” (Niamh, 2018) There is no cure for Neuromyelitis Optica but it is manageable and it’s not contagious, “It’s just in me”. (Niamh, 2018)

The biggest barrier which Niamh has experience is her health. She says it’s not the stigma, it is her own health which limits her. “People says ‘my disease doesn’t define me’ and ‘don’t let it limit you’ but that’s not realistic” says Niamh (2018) In reality, her condition does in fact, does limit her. Niamh is passionate about changing the world, unfortunately she can’t because she becomes so fatigued that she is bed…

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