Stories of NF: Shy

I was diagnosed (with NF1) at seven years old while undergoing an allergy test. I remember lots of tests coming after that. Lots of trips to children's hospitals, seeing a geneticist, MRIs. I felt weird knowing I was the only person in my family with NF. I felt lost and that no one understood me fully. It wasn't until I was 13 that I found NF camp. Thanks to CTF, I made the most amazing friends I could ask for, who truly understand what it's like to navigate life with NF.

You know, some days are hard. I'm in a lot of pain, and I can't do the things I love. It scares me that if I choose to have children, they will have NF, too.

Getting to go to an actual NF clinic for the first time, I got more information about my case that I never heard before. I think that makes it nice to help navigate how I speak to my doctors where I am about my situation. Also, that MEK is in the process of being approved in Canada. I think that will help so many people here. I used to think having my café au lait spots made me ugly, but it's just another unique feature that makes me beautiful.

I'm a barista at a popular coffee place. I really enjoy it because I get to interact with so many people. Many who I see every day. It makes me happy that the coffee I make for them brightens their day just a bit. My friends and family make me the happiest.

Favorite Song
Collide by Howie Day

Dream Superpower
Probably teleportation. Then I could visit all my NF hero friends

Favorite Food
Pickles

Fun Fact
That I speak three languages

Clinical Trials
I did in the past. It was done through the University of British Columbia. It was done with one of my siblings. I being the only child in my family with NF, the did the study comparing the differences