A question about Neurofibromatosis and amputation(s)?

I was born with Neurofibromatosis type 1, I found out when I was only a few weeks old, when they found a hole in a bone in my left leg, I had many surgeries trying to fix it. But could not, the best thing they could do was amputate, which was done when I was 2 years old. I was wondering if there was anyone else with NF that has had a limb amputated. thanks!

Thanks in advance to everyone that answers. BTW I'm 21 years old.

My son has NF1, and has had surgeries (one very major), but none for aputation.

I don't know how old you are, but the Childrens Tumor Foundation has a chat room for kids and teens with NF through their YouthConnect program on www.ctf.org. They also have a great summer camp for young people from teens to 20s.

I'll bet you can meet others there that have some of the same issues you have. Even if you're an adult, there are chat rooms for adults there, too.

I wish you the best. It can be so difficult!

I have nf one, I was diagnose with it when I was 15. When I was 18, some doctors did want to amputate my right leg, they didn't know how I was walking around. but my main doctor said it didn't have to be. I'm 23 now, I still have my right leg, but the tumor has gotten bigger which concerns my doctor.

I must say i am truly blessed..i do have NF1..luckily i have never had anything amputated..my moms was worse than ,ine and she had some major problems. I will be praying for you.

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