My name is Rick. I wasn’t diagnosed with NF Type 1 until I was 32 years old. I had no idea about it or even what neurofibromatosis was. I had been in the US Army for six years and they never diagnosed me with it. I got married the first year I was in the army, but we didn’t have any children until five years after I was discharged. Unfortunately, two years after my son was born, we divorced. I remarried two years later to a great woman. I was finally diagnosed (at 32) when we were in the doctor’s office for my wife. I was in the room with her when the doctor walked in, looked at me, and announced, “you have Von Recklinghausen’s”. I asked him what the heck it was. He said, “I don’t know much about it, but you have it.” I went to my VA doctor and asked him what it was, and he said, “I thought you knew “. So he assumed I already knew I had NF. Unfortunately, he didn’t know much about it either. I went home and broke open an encyclopedia to look it up, as it was before internet and Google. The encyclopedia had a small picture of an old man with tumors all over and a blurb saying Von Recklinghausen discovered this disorder. The other name was neurofibromatosis. That was it.
Years of me not being diagnosed, also meant my son’s NF went unnoticed too. My son had always been clumsy, but we never thought much about it until he couldn’t climb a ladder at his work. His doctor found a huge tumor around his femur bone and had to remove it before it crushed the bone. They had to use a cadaver bone to replace it. Still there was no diagnosis of NF for him, just a tumor. So, after I got an official diagnosis, we asked my son’s doctor if it could have been NF. His answer was that it could be. He questioned why we hadn’t told him that Rick had NF? The answer was that we didn’t know until now. My son now has two sons of his own with no major signs of NF for them yet.
-Rick
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