NF - neurofibromatosis

Neurofibromatosis or NF (formerly known as von Recklinghausen's disease) is a genetic disorder of the nervous system that can affect many parts of the body including, but not limited to, the brain, spinal cord, nerves, and skin. It mainly affects how nerve cells form and grow. NF can cause the growth of tumors, called neurofibromas, to grow on nerve tissue. As these tumors increase in size they can press on vital areas of the body, causing skin and bone abnormalities.

There are three types of neurofibromatosis.

• Type 1 (NF1) causes skin and bone abnormalties
• Type 2 (NF2) causes hearing loss and poor balance
• Schwannomatosis causes intense pain and is the rarest type of neurofibromatosis

Both my younger sister and my niece suffer from NF1, which is the most common form. It is estimated to affect 100,000 Americans.

In my sister's case it was the result of a spontaneous mutation in the genetic material at conception. She then had a 1 in 2 chance of passing it on to her children, which unfortunately was the case.

Effects of NF1 vary but can include

There's no specific cure for NF, but tumors can usually be removed and any complications treated. There are no guarantees that the tumors will not regenerate though.

My niece had brain surgery to remove an optic nerve glioma. Optic nerve gliomas are a type of malignant brain tumor, which often surround the optic nerves, and can result in loss of vision and hormone problems.

So much thanks to Le Bonheur Children's Hospital

She has no idea that she had brain surgery. She is still far too young to understand the disease and the effects it may have on her body.

We didn't really learn of NF until my sister's early teens. Even then none of us really understood what the disease was or how it could and would affect our lives. We basically muddled our way through whatever came along.It wasn't until my niece was diagnosed with the glioma that the seriousness of the disease hit me.
I started researching NF and NF1 in particular, but there is not a lot of information to be found. I have been sifting my way through what I found, hoping to learn more and maybe be better prepared for what lies ahead.

While researching, I came across Children's Tumor Foundation, which has proven to be an invaluable resource. I visit the site often to check up on the latest news/research. It was on this site that I came across Cupid's Undie Run.

https://www.facebook.com/CupidsUndieRun

I am so proud to say that my older sister and baby brother braved the cold and ran in their undies for such an amazing organization. I am totally joining in the fun next year.

Keep an eye out for more information as we help raise awareness.