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.