I was born with NF 1 but wasn’t diagnosed until I was 4 years old. Back in the late 80s and even early 90s, there weren’t too many doctors who had heard of NF. I remember being 6/7 years old and explaining to doctors why I had numerous birthmarks or why my hand looked swollen. Overall, I’ve been lucky. I’ve only had to have a handful of surgeries to have tumors removed.
Today, more doctors have heard of NF but many still aren’t familiar with the disease. It’s my hope that one day a child can walk into a doctor’s office and not only have that doctor know what NF is, but but hear that doctor say “there is a cure.”