Neurofibromatosis

[livingwith]

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 ...Read the full article

[kaela]

hi Tonya i just signed up on this site this morning after another night walking the house in pain. You said that you were'nt told that you could pass the nf down , well the same thing happened to me i researched it myself and went back to the specialist and had my daughter in my arms (4 months at the time) when he said quite casually oh yes she has a good chance of getting it. needless to say i was devastated you'll know what i mean, it's very hard for people without nf to understand however hard they try. But i thank God for my daughter everyday if he had told me i might'nt have had her and the very thought of that is unimagionable so every cloud and all that ! she's ten now and i don't know whether or not she has it yet as i have schwannomatosis and the on set of that starts late. i really wish you all the best for you and you'r children and i hope that all goes well for ye're futures. I'll be thinking of ye.