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Stories of NF: Joseph N

By January 10, 2024January 23rd, 2024NF1, Story of NF

A woman in a white dress and a man in a white shirt.I was diagnosed at three months old with NF1. I Struggled with vision early on and underwent eye muscle surgery, and saw several different doctors until I was lined up with a neurologist and an optometrist. This led to several MRIs which showed neurofibromas on my skin, spine, and on the optic nerve. Plexiform neurofibromas were found on my optic nerve and right leg. I could tell early on that pain would be a constant companion.

Growing up people would constantly ask about my eye and what was wrong. I learned quickly that I looked different from others and that I would be answering these type of questions a lot. I was raised not to let this affect me on a daily basis or wreck my future plans. Although I live in constant pain I try to take each day as a blessing and work to meet the goals I set for myself. I have recently had a new challenge present itself as a result of NF. I spent 4 days in the hospital due to my neurogenic bladder which also is common with people with spinal tumors. I know have to give myself a catheter four times a day in order to empty my bladder so as to damage my kidneys.

NF definitely has impacted my future plans. Wanting kids but knowing that I have a 50% chance of passing NF on to them has really caused me to think deeply about those plans. I know that as my life moves on I will always have to keep on top of my diagnosis but I know that I will continue to strive to the best person I can be. I am currently a practicing attorney living in St. Louis. I enjoy spending time with my dogs and family. I also enjoy watching sports, being outside, and cooking.

My defining moment was when I graduated law school. I was able to beat the odds and did not let my NF slow me down. Even through all the pain and other issues NF brings I was able to fight and finish the dream I had set out for myself.

Favorite Song
Cheeseburger in Paradise – Jimmy Buffet

Favorite Food
Chicken Wings

Fun Fact
I have 2 sisters (one older and one younger)