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

Joel – A Face of NF

This is my son Joel. He was born with neurofibromatosis type 1.  Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. He was not diagnosed until he was six months old, after he kept getting more “ birthmarks”. We found out they were called café au lait spots and they told us what he had. There was no history of this in our family, that we are aware of, so it was a spontaneous occurrence versus hereditary. It’s about 50-50 either case. Joel‘s childhood consisted of going to the endocrinologist,  ophthalmologist, and NF clinics. He had a fibroma (tumor) on the brain stem area when he was around 11 years old. It was at that point in my life that I completely gave my children, including him, over to the Lord. Joel has been very fortunate. He is 25 now and faces different challenges with NF. His faith in God is strong and he relies upon Him to strengthen him and carry him through. I am so proud to have shared in this journey with him and through the challenges, what a strong amazing man he has become.


See More Faces of NF/Read Their Stories


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