No cure doesn’t mean no hope

I was born with a neurological, genetic disorder with no cure. I’ve often said, and I will say it again, no cure doesn’t mean no hope.

I have neurofibromatosis type 1. What does it mean, for me, personally? Well, I’m glad you asked!

My vision is absolute shit. I am defined as low vision, meaning my vision does not correct above 20/70 even with glasses. Lasik or other correctie surgeries are not an option for me. It means I use larger fonts, sometimes need help reading things, etc. It is one of my more difficult disabilities for me, though I’ve learned how to adapt in many ways.

I have multiple learning disorders. I have dysgraphia, dyscalcuia, and ADHD. I am also autistic, which may or may not be related. I also struggle with spelling and grammar, which while it isn’t a specific learning disorder, it’s certainly related to all this stuff.

I have…well, had? Scoliosis. I’ve had two back surgeries as a result. I also have vertebral scallopingand dural ectasia. Basically, my back is a hot mess.

As a result of my NF, I have migraines.

Because I have NF, I don’t know what it’s like to not be in pain. I don’t know what it’s like not to hurt. I don’t know what it’s like not to be able-bodied, because I never have been and I never will be.

This disorder has no cure. This disorder has no treatment.

But it doesn’t mean I’m without hope.

It doesn’t mean that my life isn’t worth living, disabilities and all.

In September, I’ll be walking with the Children’s Tumor Foundation. Please consider sponsoring  me?

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