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NF Awareness Day 2017

My name is Nora. I am twenty-nine years old. And I have NF type one.

NF, or neurofibromatosis, is a genetic disorder. I was born with it, and I will die with it. The way it affects people is different – it’s what’s known as a snowflake disorder as no two people with it are alike. I only know how it affects me.

I have cold intolerance.

I have heat intolerance.

I get migraines.

I had a tumor….but I am incredibly lucky (or unlucky?) in that my one tumor actually wasn’t NF related. Yeah. I would have had it anyway. Luck. Skills. Or something. I have it.

I can’t regulate my weight.

I live with pain.

My immune system is shit (well, okay, this actually isn’t completely related. One of my doctors once told me my body doesn’t read the textbook…)

I am autistic.

I have ADHD.

I have a balance disorder.

I could go on and on.

There is no cure, no treatment.It’s just how I am. It’s just how I always will be.

I am low vision.

There’s so much of me that is who I am because I have NF.

All I want is treatment.

All I want is relief.

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