For those of you who know me and have followed my journey for awhile know my personal struggle with the genetic disease called Neurofibromatosis. To those new to my journey, it is apparent when looking at a photo of me that something is different. This post is about living with Neurofibromatosis type 1 (NF1), and what actually gives me life.
NF1 is a genetic disease that, among other manifestations, causes tumors to grow on the body anywhere there are nerves. Half of all those with NF1 inherited it from a parent, the other half because of a spontaneous mutation of the NF gene. NF1 occurs in 1 in every 3,000 births around the world. There is no cure, although drugs are currently in development that may help slow and/or reduce certain tumor growths.
Back in October I noticed a social media post from the Children’s Tumor Foundation (CTF), a non-profit organization aimed at raising funds for research of all NF-related disorders, raising awareness, and patient support. A big gala fundraiser was approaching, and they wanted selfies from the NF community to use during the event.
I had just returned from a fantastic hike on Mt. Emei and emailed my selfie on the mountain, adding that I was in China with the Peace Corps. The PR-manager thought that was great and asked if I would write a personal story for their website. You can read the post here. In fact, when I sat down to write my story, I took inspiration from an original post on this blog, On Disfigurement and Grace.
When I applied to the Peace Corps and accepted the invitation to serve, I knew the medical clearance process was going to be a challenge—as it is for many of us. But I knew I would have the additional challenge of seeing specialists to document the disease and support me that I was healthy enough to serve with these tumors. I’m grateful for supportive specialists and the medical insurance that allowed me access to them.
It is true that every day when I look in the mirror, it’s a challenge to go outside. But as you can read on this blog and elsewhere, I choose to live and do that which gives me life. I’m proud to be serving in the Peace Corps and happy to have traveled all over the world.