Neurofibromatosis (NF1)?

Hi has anyone on here heard of or have the genetic condition neurofibromatosis 1

I have it myself causing some disability, my 4 children have it causing various special needs and disabilities such as Asperger's Syndrome, ADHD, Global Developmental Delay, Scoliosis, pain from benign tumours and other bone deformities.

I would like to know how the condition effects other families as I have no-one else living close to me in South Wales with the condition (that I've heard of that is)

http://www.ctf.org has a lot of information on it as well. It has a BB (NF Resources>Discussion Board) that you can post on and ask questions! Hope this helps you!

Most debilitating illnesses have support groups - is there one for neurofibromatosis? Check on Google or ask at your G.P.s surgery, your Consultant's secretary or maybe social worker..
Nasty disease - my niece married a guy with this.

Try this site if you haven't already http://www.nfinc.org/camp.shtml

Have heard of it. Von Recklinghausen disease fairly common.
1 in 3500 people.

Hi there

Yes I have it and so does my Son. E-mail me if you like so we can chat, have a moan ........and a laugh!

There is no cure for NF. The main goal of treatment is to monitor its development and intervene when necessary. Healthy children with NF should be followed-up and examined every 6-12 months by a paediatrician. Neurofibromas that become large and painful can be cut out to reduce the risk of malignancy and other complications. Genetic counselling and education about NF is important. One concern that should not be overlooked is the risk of isolation or loneliness in people with NF. People with NF are often anxious about future complications and sometimes disfiguring lesions can lead to withdrawal from society. Although the effects of neurofibromatosis vary greatly from person to person, most people with NF live fulfilling and productive lives. We know more now than in the past about how to diagnose, prevent and treat many serious complications of NF. Certainly, there is still a great need to learn more, but if NF research labs and organizations such as BCNF continue to work together, our understanding of this complex disorder and our ability to treat it effectively will be much better tomorrow than it is today.

Hiya

Yes my brother has NF.
www.nfinc.org is good support network.

As the consultant or doctor about local support groups. My parents got loads of information about different support groups when they found out about my brother.

It was tough at the beginning but his condition seemed to settle down. Now it has got worse again and he is awaiting hospital tests at the moment so bit stressful at the moment.

I am about 6 hours from wales unfortunately but i would ask at the hospital about support groups at your next appointment.