Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Jenny – A Face of NF

I was diagnosed with neurofibromatosis type 1 (NF1) when I was 16 years old. As a child in school, I suffered from learning disabilities and was put into special education classes. Then at the age of 34 my life was changed forever, I had to undergo a major surgery. Tumors began to grow uncontrollably inside my bladder and uterus. The surgeon had to completely remove both and then rebuilt a new bladder.  I had to empty my bladder through a tiny hole in my abdomen. Recently, that bladder failed and now I have a bag outside my body.

I am the first and only one in my family who has NF1.   I have a 50% chance with each pregnancy of passing NF onto my child, if I ever decide to have children. NF Midwest has been a source of support for me through their outreach, especially through social media, and the Great Steps 4NF walks.

“I had to undergo a major surgery that changed my life forever”

neurofibromatosis, nf, nf1

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