When people learn that I’m raising money for neurofibromatosis, I’m pretty sure they hear crazy scientific babble and then translate it into "some horrible, obscure disease." When I joined the organization, that was pretty much my reaction, too. I didn’t know what NF was, but I knew it was a cause that needed my help. (And I will not pretend that I did not, in turn, need their help so I could get to Germany.) But now as I work towards reaching my fundraising goal, I’m growing more and more interested in what that money is for.
Today, I’d like to share with you a personal story about NF from one of my readers, Taryn:
This is my sister, Tristyn Jaelyn. Getting ready to start her senior year of high school, she lives life like most teenage girls do. She’s a diva; she loves to go to the mall, spend all of her money on clothes and shoes. She’s obsessed with Justin Bieber. She enjoys singing for the high school chorus and taking stats for the high school soccer team. But, unlike any other average teenage girl, Tristyn has Neurofibromatosis (NF).
Neurofibromatosis is a disease in which neurofibromas (tumors formed on nerve cells) form throughout the body. There are two different types of NF, NF Type 1 and NF Type 2. NF Type 1 is the more common of the two, and is a gene mutation found on chromosome 17. It causes non-cancerous lumps, cancer prone “birth marks”, enlarged skulls, scoliosis, eye difficulties, learning difficulties, and sometimes even epilepsy. NF Type 2 is an inherited disorder, a bit more severe than NF Type 1. Tumors grow on the brain, in the eyes, the ears, and all over the body. People with NF 2 have many side effects such as loss of eyesight, hearing, problems with the nervous system, and the same effects as NF Type 1.
Luckily for us, Tristyn was diagnosed with NF Type 1. She was diagnosed at birth, after 100 “birth mark” like spots were found on her body. These birth marks, called Café Au Lait spots, are known to grow tumors. At one point, Tristyn had to be taken to receive a CatSCAN on her brain, where they found many of these Café Au Lait spots. Even today, she gets new spots and we have to take her in to get them checked out. Thankfully, none of her spots have grown into tumors. Tristyn has been through a lot because of her Neurofibromatosis, but she’s enjoying life just like any other teenager does.
I hope that sheds a more personal light on the disorder. It’s so wonderful to hear that Taryn’s sister is doing well, especially considering that many other NF sufferers are not.
Do you know anyone with NF? If so, I’d love to hear your story.
Have a good evening!