I was born broken. My left lung collapsed. From early on, I had a long, rough road ahead of me medically speaking. The amino said I was fine. Everything pointed to me being fine – but people were mistaken. I was not the healthy, vibrant baby that my parents were expecting. If only the collapsed lung was the only problem…
When I was three years old, I was diagnosed with neurofibromatosis type 1. NF1 occurs in one in every 3000 births. I currently have no visible tumors, but have lische nodules, or benign tumors, that are visible in both of my eyes. I have several cafe au lait marks, which is one of the trademark signs of NF1 (in fact, I don’t believe there is another disorder that these marks occur in). I have armpit freckling, a larger-than-usual head, and bone deformities. I have learning disabilities (namely dysgraphia and an in-process DX of one in math).
NF is kind of my overarching disability. All my others stream out from having NF. I see a specialist for it, and I’m at high risk of getting cancer or tumors some day. My back surgery is so important because due to the NF1, I have dural ectasia and vertebral scalloping in addition to the regular curve.
NF affects my heart, it affects my learning, it affects everything about me. My NF is the reason that I am the way I am now. There is currently no cure, but there is work being done to find one to help children. I, with a moderate case, am one of the lucky ones, believe it or not. My case is progressive, and will continue to take over my life.
May is NF awareness month. To keep up to date on progress on this crippling disorder, become a fan of the Children’s Tumor Foundation which will give you all the info you need.
May we one day find a cure.
May we one day find an answer.
May we one day heal this disease that causes me to live in pain every day, bounce from doctor to doctor, and suffer silently.
May we one day be able to say, NF is an extinct disorder.
And until that day, may we find a way to live in peace.