My NF Story
I was diagnosed with Neurofibromatosis Type 1 as a toddler when my mother noticed many birthmarks on my body, which are called Cafe au Lait spots. Through genetic testing it was confirmed that I had NF Type 1 and it was the result of a spontaneous genetic mutation, meaning neither of my parents have the NF gene. Fortunately, it did not affect my development as a child and really never had a huge effect on my life as a young age. I did go to extra doctors appointments growing up to monitor my NF along with several MRIs to check to see if there were any tumors developing in my brain or along the optical nerves. As NF causes benign tumors to grow on the ends of your nerves. Some can be painful or some you may never know they were there if they are under the skin.
I was lucky enough to receive a scholarship from NF Northeast as I was entering college in 2014. It was a great help for me and my family as I entered my first year of college. Now as an adult, I would like to give back to NF Northeast by participating in their annual Walk2Cure NF. I want to be able to support this organization so they can help provide scholarships to those young adult with NF and to help fund research for NF as there is no cure at this time.
As I mentioned earlier while I was growing up I had many visits to monitor my NF but once I reached an age where they did not need to monitor closely anymore I realized I wasn't being seen at all for it. About 3 years ago I starting going to the Comprehensive Neurofibromatosis Center at NYU where I am receiving care to manage my NF as an adult. I have developed several neurofibromas in different areas on my body most which are not painful at all; I do continue to notice more popping up as I get older. But I did recently have a surgery to remove a very painful glomus tumor from my thumb which developed because of my NF. There is a high chance it can return. I am very lucky to not face too many problems from my NF but as I approach the age of having children, it worries me that there is a 50% Chance that I can pass this onto my child. While I have had a very mild case of NF, it doesn't mean that they would because everyone's NF journey is different. I hope you can help support and Steps2Cure NF this year! Thank you!
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My Supporters
- Terry Wilson April 2023
- Nicole Violi Cara, YOU GO GIRL! April 2023
- Grace Ferrara April 2023 $100.00
- Stefanie Mongiardo April 2023
- Carey Daddona April 2023 $50.00
- Grace Ferrara April 2023 $100.00
- Connecticut Closets & Garages March 2023 $100.00
- Carey Daddona April 2023 $50.00
- Mary Ruby April 2023 $50.00
- Cara Guerin March 2023 $50.00