Frank Buono PhD, from the Department of Psychiatry at Yale School of Medicine and longtime member and supporter of NF Midwest, just published an article on pain and neurofibromatotis type 1 in the Journal of Pain Research called Pain symptomology, functional impact, and treatment of people with Neurofibromatosis type 1. Thank you to those in…
Read MoreEvita – A Face of NF
My name is Evita Ali and I have NF1. I was diagnosed with neurofibromatosis when I was 30years of age. All my life, since I was a child, and going to the doctor for various things, thedoctors always seemed intrigued with the amount of birthmarks I had. Not one doctor knewanything, so we just summed…
Read MoreSilas – A Face of NF
My sixteen-year-old son began getting café au lait spots at two months old. Our pediatrician at the time gave us a very grave description of neurofibromatosis. My husband and I were in complete shock, disbelief, and crushed with the information that she had given us. At that point, he only had the CALS, so we…
Read MoreShad – A Face of NF
I joined the Army at 19 years old. I did all the training and arrived at my duty station. In the mornings we did physical training, which involves running. Well, my knee started to hurt after a while, and I ignored it. I enjoyed running, as it’s great way to clear my head and I…
Read MoreSarah- A Face of NF
My STRONG and POSITIVE Sarah was born with NF1. Sarah has had 12 surgeries, 14 chemo sessions, 58 MRI’s, and radiation to the brain. Sarah has an optic glioma on her right eye, and she also has tumors in her medulla and pons. We were told she would not live past age 6. Sarah turned…
Read MoreBen – A Face of NF
My name is Ben. I’m graduating high school next week and heading to college this fall. Neurofibromatosis type 1 was confirmed by my pediatrician at my one-year old visit. I am the first in my family with the diagnosis. Thankfully, I’ve had minor complications with only one tumor removal and one plexiform tumor. Academically, I’ve…
Read MoreRJ – A Face of NF
We had moved from a quiet neighborhood to a go, go, go city which meant switching all our providers. When we got to our new location, my son went to his 9 month checkup. At that checkup, the new doctor said, “these brown spots look like café au lait spots”. I said, “huh?” I have…
Read MoreGeri – A Face of NF
I was diagnosed with neurofibromatosis type one at birth. It was caused by spontaneous mutation. I was born with glaucoma and had my first major surgery at 5 days old. I had a goniotomy and it didn’t take. So at 5 months old, I had to have a trabeculectomy to try to relieve the intraocular…
Read MoreSteve – A Face of NF
I am 67 years old and I have NF2. When I was 45, I had my first acoustic neuroma (now known as vestibular schwannoma) surgically removed and my second one removed 10 years later at age 55. I had a cochlear implant placed after my second surgery, but it has never worked. The surgeries to…
Read MoreTaylor – A Face of NF
I have been running competitively for almost 2 years and love it. It helps me relax, great stress reliever gave me a new goal to accomplish. That is to run a marathon someday with my little brother and raise awareness for NF. I never really was a runner when I was younger mostly loved soccer,…
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