Neurofibromatosis Awareness Month

[son_of_a_gunn_25]

Posted: 5/4/04 at 5:31am

Updated On: 11/27/08 at 05:31 AM

[iflitifloat]

Posted: 5/4/04 at 5:47am

This disease was what people thought The Elephant Man suffered from....but in truth, didn't. (He had a similar, profound, genetic disorder, but not this one.)

As with all genetic disorders, it's good that you found out early, Son. Interesting link. Thanks for sharing.

[mominator]

Posted: 5/4/04 at 7:12am

son of a gunn... I also have NF type 1 as does my youngest daughter. Thanks for spreading the word!
Barbara

Ok found it, What Mr. Merrik had (AKA The Elephant Man) was Proteous Syndrome.

Updated On: 5/4/04 at 07:12 AM

[son_of_a_gunn_25]

Posted: 5/4/04 at 2:27pm

Updated On: 11/27/08 at 02:27 PM

[Ruffian]

Posted: 5/4/04 at 2:31pm

I sure will check out the info

I hope you all stay well, and handle this as well as can be managed

[mominator]

Posted: 5/4/04 at 4:29pm

I hada small toumor on my right eye when I wasorn as well as a larger on my rihgt side. The one from my eye was removed when I was 9 months old. The one on my side was removed when I was 13 just before my scoliosis operation ( another side effect of NF). The one from my side was not as sucessful as the first. Other than the scoliosis and mild dyslexia ( another SF of NF)I grauated from aprivet prep school and college. have 3 children the oler two have no signs of NF. My youngest has a mild form of it and is doing wonderful. No scoliosis or dylexia, but is very mildly LD. She has made Honor Roll for ever it seems while taking main stream and advance classes. Her doctors seem to think that since she has to work harder, it keeps her focused.
So folk if you have questions please free to ask. The NF web site has tons of info!
Barbara

[Ruffian]

Posted: 5/4/04 at 4:37pm

You sound like you got good attitude about the entire situation, Good For You!!! I know some people stub a toe & you hear about it like they lost a foot. Your daughter clearly takes after you on that account

[mominator]

Posted: 5/4/04 at 4:52pm

Thanks Ruffian! I get that from my mom. But I really should do a spell check before I post!

[Ruffian]

Posted: 5/4/04 at 5:01pm

Wots a little badd spelling?

[son_of_a_gunn_25]

Posted: 5/4/04 at 5:05pm

Updated On: 11/27/08 at 05:05 PM

[mominator]

Posted: 5/4/04 at 5:13pm

You said it son!!!
Barbara

[Ruffian]

Posted: 5/4/04 at 5:17pm

CHEERS TO YOU BOTH

[thirdrowcenter]

Posted: 5/4/04 at 5:26pm

Are a certain number of cafe au lait marks on a person's body a marker for NF?

[son_of_a_gunn_25]

Posted: 5/4/04 at 5:32pm

Updated On: 11/27/08 at 05:32 PM

[mominator]

Posted: 5/4/04 at 5:38pm

son, may I ask what hospital are you at?

[son_of_a_gunn_25]

Posted: 5/4/04 at 5:45pm

Updated On: 11/27/08 at 05:45 PM

[mominator]

Posted: 5/4/04 at 5:48pm

Glad to hear you have some one good. I have been at Massachusetts General, another great place for NF. When I was small I was at Boston Childrens.
Barbara

[dramaqueen]

Posted: 5/4/04 at 7:41pm

you two have good attitudes about these things-i too have a genetic disease-i think i might star t looking from ur persprective-thanx!!

[thirdrowcenter]

Posted: 5/4/04 at 9:18pm

I had no idea that NF occurs in every 3000-4000 births. (I just read it on the website)

[mominator]

Posted: 5/4/04 at 9:29pm

With my family it was a spontaneous mutation in my father. So each of us kids had a 50/50 chance of having NF.Being a dominant gene there is a 50/50 chance of passing it on. When I was having my children there was no genetic counseling. But it is now there for my kids and neices and nephews.
Barbara

[son_of_a_gunn_25]

Posted: 5/25/04 at 11:30pm

Updated On: 11/27/08 at 11:30 PM

[orion59]

Posted: 5/26/04 at 8:12am

I'll help you pull it back to the top by adding my post.

You both seem to have a positive attitude about this. That's very important in helping yourself deal with it on a day to day basis. Like Ruffian said, some people overreact to a stubbed toe. When you find out that you have a disease and eventually get over the initial shock and fear, it seems to do a world of good to accept it, learn to live with it and control it as much as possible but, not let it predominate everything in your life.

I found from my own personal experience that this kind of attitude seems to add to your health. Some people give in and think it's the end of the world because they have to take medication or go to a doctor's office more frequently than most poeple do. Some people seek out excessive sympathy which only keeps the disease in the front of your mind and causes others to see you differently. They just make the situation worse for themselves. So, I applaud both of you on your attitudes and outlooks.

[son_of_a_gunn_25]

Posted: 11/2/04 at 4:25am

Updated On: 11/27/08 at 04:25 AM

[son_of_a_gunn_25]

Posted: 11/2/04 at 4:45am

Updated On: 11/27/08 at 04:45 AM

[broadwayguy2]

Posted: 11/2/04 at 5:02am

we <3 son! he always keeps us well informed