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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