Neurofibromatosis

[shelbs79]

Hello! I have NF2. I have had 6 surgeries for scoliosis, suffered from several seizures and was always in specialized classes for my LD. I now suffer from high blood pressure and my neurons only seem to become bigger as well as multiple. I just want to know will they ever stop developing and/or growing. I have had several removed but then more pop up. I am very self conscious about them and get defensive when asked questions. I just need to know that there are others out there that understand what I am going through. Also I would some day like to have children, but am afraid they will also have NF and that since hormones can causes neurons to form that I will just develop more. I am open to any suggestion anyone might have or at least someone to talk to.


Thank you

[Ginah]

Hi, I have NF also--it increases in numbers when I got pregnant and I have 2 kids--a girl now 14 who was diagnosed with NF1 when she was just born because she had 6 cafe -aulaits on her body. The bumps came out like magic and they appears where people could see it. I got operated twice in my spinal cord because there was a tumor and it grew back after the first surgery 10 years ago from my first surgery. I also had a surgery on my right tight due to a hard lump inside. Besides the bumps on my forehead, neck, feet, toes, fingers hands, face--there are also some bumps inside my body which is causing me to have pains and aches all the time especially when it's very hot. I feel tinglings and sudden jerking of my fingers. It scared me sometimes but I am okay. There are no strenght on my hands and fingers. Now, there is a sudden growth of lump on my throat---yesterday it was not there, today it's there---just like magic and so it's kinna weard for me. I don't know what to say to you but to give you one advice--have a peace of mind..I know and sure you used to have a beautiful, soft, nice skin before but now it's not so good anymore due to NF. But, we can't give up hope and desires--if you want to have a baby--have a baby--we can't just assume that our kids will get it just because we do. I know my daughter has it--but my son is okay. And to be honest--my kids are beautiful. So, if you're able to have kids--why not especially if you really want to and I think it's safe because my pregnancy went fine---didn't have no complications or problems----I had C sections though because the babies were breach. But I was fine. I know I am ugly now due to the bumps but I think I am not that ugly looking. About my daughter--now she have more cafe-aulaits on her body. So far she is fine. ..Well, take care and God Bless .