Living with Neurofibromatosis

My name is Tonya, I have NF1. I was diagosed at 16 with the removal of a subcutaneous neurofibroma. Unfortunally I wasn’t told I could pass it on to my kids. Since nobody in my family history has or has had it I didn’t know.

I have 2 kids with NF. A 16 year old girl and a 15 year old boy. Both have it. Both have had multiple MRI’s of their brains, xrays, and other tests since shortly after birth.

We hav all had struggles, school is the big one for the kids. They both struggle terribly. I have talked with their teachers some are good about it some aren’t.

My problem is cutaneous neurofibromas I have hundreds. I am losing more self esteem everyday. People do look, very few ask, but I have no problem answering questions. I like to educate people about the disease. The subcutaneos tumors hurt I have them too. I have a lot of depression too. I don’t know which came first depression or NF. If one has to do with the other. I am glad there are people out there that experience the same things I do. But I also with nobody else would have to have this disease.

I appreciate this opportunity to discuss this.
Thank You,
Tonya