What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
Join Now
|
Friend was just diagnosed....
|
Watch this |
| View More Posts Ignore |
I really dont know anything about Neurofibromatosis. One of my best childhood friends (and my neighbor), was just diagnosed with it about 2 months ago. Hes always had these little bumps but we never really knew what it was. Come to find out he had 'bumps' on his brain also which was putting pressure on his eyes and ears. About a month ago he had surgery to take one of them out. When they did, he lost 100% hearing in one ear and 70% in the other. When they go in to take the last one out, the doctors predict he will lose all of his hearing. I dont know what to do or how to comfort him. I grew up with him and I feel horrible about it. Does anyone have any ideas of how I can help him cope with it and myself??
Posted on 07/12/09, 03:07 pm |
| 3 Replies | Add Your Advice |
| View More Posts Ignore |
just be there for him and support what he is going through.
my NF does not effect me much other tban some bumps and spots so i can not relate so much on the major issues but still if mine took a major turn i would just like to know there are people in my corner. you seem like an awesome friend for coming here to ask what to do so do what your heart tells you. 
|
|
|
|
||
| View More Posts Ignore |
Make sure he go to a neurologist that knows about Neurofibramatosis in your area. They can help him learn more about the disease and give you information.
There is a on-line NFchat room http://www.ctf.org/chat/ there are people there you can talk to. they are friendly, and they come from all over the world Also there is a site that one of the fellow NF'ers has reggiebibbs.com You are a true and amazing friend tc to you both Tears
|
|
|
|
||
| View More Posts Ignore |
It sounds like your friend has NF2. Someone I know has gone through the same thing but she was able to get cochlear implants to help retain what was left of her hearing. She has learned to lip read to help, too. My advice is for him to educate himself as much as possible about NF2. It sounds like you are a great friend - good on you. My advice to you is to be patient with him and just be there for him. bless you.
|
|
|
|
||
| Add Your Advice |
