Neurofibromatosis
 

I don't have it, but I wonder if others here suffer with this. I just learned about it here: http://www.ninds.nih.gov/disorders/n...bromatosis.htm

I don't have it either AMN, but we've had one or more new members with it over the past few days, so I also took the time to look it up and learn about the condition myself.

It certainly sounds awful and I thank you for posting this the link. Hopefully others will see it and also learn.

Here's the link I found the most helpful: http://www.kidshealth.org/parent/system/ill/nf.html

I have a nephew that has it... thankfully it can have many different degrees and he has some effects from it but so far, his are more minor.
It was discovered after he broke a bone and it was far more severe than it should have been. His was a mutation just with him and does not run in the family. He does have problems learning and speaking.

I have this
 

This is the condition I have as well as my 2 children. It is an awful condition. It is very unpredictable and affects everyone diffrently.

I have that...

Welcome MnM... sorry that you are afflicted with NF...
How are you effected?

Neurofibromatosis
 

My daughter has Neurofibromatosis type 1. It does not run in our family. She is 22 years old. She has had multiple spinal surgeries to remove tumors that were compressing her spinal cord. She also had a malignant tumor (a MPNST) removed from her sciatic nerve in her left leg. They had to remove the nerve to get the tumor. As a result, she has no feeling or function from her knee down. They feel they got all of the tumor and she is doing well. She is able to walk but has to use a walker.

NF is an awful disorder. There is no treatment or cure. The first line of treatment is surgery to remove the tumor that is causing problems. However, since the tumors are part of nerves, when you remove a tumor is severs a nerve resulting in the loss of function and/or sensation somewhere in the body. Also, when the tumors are growing, they are painful.

1:2500 people are born with NF. It is quite common but no one has heard of it since there has not been any media coverage about it. It effects everyone differently, even within the same family. You can learn more at: **

~Lynne

Big challenges
 

My heart goes out to you and your daughter, & all family and friends. How challenging to have such a rare disorder using an almost barbaric surgical intervention. Despite this frightening scenario, I pray she can maintain a sense gratitude, and hope all blessings, peace and love will come to her, despite the suffering. May you be blessed with all the resources needed to remain strong for her. My prayers, big hug and bunches of flowers for you both.Thank you for reaching out to let others know. Best Wishes TT

The main organization for NF is the CHILDREN'S TUMOR FOUNDATION. You can google it and find their website. They have a lot of good information there and support.

It is a struggle but she's living the best possible life she can. I just wish she had more social contact. After high school, her friends have moved on with their lives and my daughter is lonley. We have hired a high school girl to come to our house twice a week after school and be her companion. My daughter really looks forward to her visits. They play games, bake cookies, go to the movies, and just hang out, like girls that age are supposed to do. Thank goodness for Facebook. At least that gives her some sort of virtual social contact and makes her feel remembered and thought of.

Thank you for your blessings, good thoughts and encouragement.

~Lynne

Hi Lynne,

I'm sorry your daughter has this disease. It sounds like you're an awesome mom. :hug: Facebook can be wonderful and I'm glad your daughter likes to use it. God bless you both.