Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.
I was 16 years old when I was diagnosed with NF1, following a series of doctor appointments over the course of four years because of chronic headaches. My father was diagnosed before I was born and now I was being diagnosed with it.
Eli was diagnosed with an eye condition called PHPV as an infant, which resulted in a detached retina at 12 months of age. Later, at age 5, he was diagnosed with NF2.
I was diagnosed with NF1 when I was about 6 or 7 years old. I have 3-4 plexiform neurofibromas. I have healed scoliosis (I had surgery as a child). I am a lawyer and I live in Turkey.