Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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Hi Everyone!
I joined this group because my brother has NF1 and I would like to know more in order to be a better supporter when has challenges related to this. When I was a kid I used to beat up the other kids that made fun of his cafe-au-lait spots and his fibroma bumps, but as an adult now I don't think that's quite acceptable. I am hoping I can get him to join in this support group as well as he doesn't know anyone else with NF. We went to a genetisist once when he was 6 (22yrs ago) and never went again because he told my parents that he didn't like being poked and proded. I know that he doesn't know a whole lot about NF, and he has talked about going to a genetisist to maybe get examined and talk to them about some of his larger fibromas. Posted on 08/15/08, 12:08 am |
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Hiya and welcome. You will meet lots of friends here and also get tons of support and advice. Myself and my two children have NF. I have never been to a geneticist but both my children have!!! I never knew I had NF until my eldest was diagnosed and I was approx 32 years old!! I like to think I have managed pretty good so far, although some may beg to differ. LOL. Ok I am waffling but a big welcome to both you and your brother.
Hugs 
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NF comes in a lot of forms from mild to extreme, and since I have been mild, I rarely go and see a doctor regarding it.
My son has NF so I have him followed every 6 months just to make sure since in the beginning he had some issues. Welcome to the group, everyone here is kind and supportive when it comes to NF and giving information.
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one of the most wonderful things you can do is give him your love and support. it seems you are doing that. bless you , your bother is lucky to have you, i envy him.
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Im also 28 with NF1. i hope you can convince your brother to join us here. there is a great group of people here who are very understanding and supportive and give great advice!
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Hey there, I am also 28 and have Nf1. I have only joined the group fairly recently and find the support great and we can all talk to people who have what we have.
After joining the Dailystrength website i didnt know that NF can be so severe. Its a great place to chat and get the advise. Looking forward to chatting to everyone here and more. Marty :)
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