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Stories of NF: Katie

By May 24, 2023January 30th, 2024Awareness, Story of NF

I was diagnosed very young. My mom has it so I guess they found it early enough for me to watch. When I was about six, my mom noticed my back was curving and took me to get checked. We found out the scoliosis I had was almost an s, we tried a brace but it didn’t work, so not even a year later I had my first spinal fusing fusion of my thoracic leaving room to grow. I’ve been told I had lesions and they took out a few fibromas. From 2nd grade ,up untill my freshman year, I couldn’t take gym and was told no contact sports. It was hard feeling left out and bullied for the condition kids didn’t understand, especially 20 years ago.

NF is definitely a challenge and it can be scary. I try to live everyday with positivity. It was hard getting doctors who didn’t know about NF to listen to my struggle. I grew up, in my teens till now, with bad headaches and they didn’t tell me I had an optic nerve glioma till I moved half across the country. The new doctor asked if I knew about it and that they found past scans and reports. I have a lot of pain from the fusion and recently had radiation for an optic nerve glioma so headaches some times take over a day or two. I don’t have a lot of fibroma in cosmetic areas so it doesn’t affect too much of my outward life, but I feel because I may look normal people don’t understand and take it harder on me when I struggle. I want to go into the medical field but I don’t know if I can with chronic pain with long hours.

My defining moment might have been in radiation, or most recently, pregnancy and giving birth. With being pregnant, the condition gets exacerbated, and I had a rough time. But it really made me realize how lucky I have it and that I can’t just give up cause it feels hard. And even though it’s scary, I can help others, and now have a perfect daughter who’s healthy despite the struggle to get her here.

I love music, games, and art. I stream video games and art in my free time. I recently have been bartending but now for now im a stay at home mom. I want to go back to school to finish my degree and go into a field of helping people. What makes me happy is my family and if I can make a difference for someone. I have a beautiful newborn daughter and family, and I couldn’t be happier.

Favorite Song
Anything from Set It Off or Ice Nine Kills

Dream Superpower
Power to heal people, get rid of some sickness, or at least help someone feel better

Favorite Food
Spicy food or Rita’s Italian Ice (I miss it they don’t have it where I live)

Fun Fact
I started college right after I turned 17, going for law and psychology