Neurofibromatosis Support Group

While i cannot speak for everyone, but sometimes all of the emotions and feelings never go away completely. you just learn to deal with them or push them aside. you can trust me when I say no one wants this disorder. No one would even wish it on their worst enemy. I have never known what it is like to not have NF as I was diagnosed as an infant. for me accepting that i had NF did help a lot. as did learning as much about it as i could. its ok to be scared and frustrated we have all been there. you are not alone, and we are all here for you if you need to talk or vent.this is a great group of people!

I can relate Benzar, for the first 30 years of my life, I didn't know I had it. It is hard to get your mind around. But it will get easier. Trust me on that one. And although I always know I have it, I don't think about it every minute anymore. And I am a bit afraid of the future, but what will be will be. Hang in there. And Mafrank is right, no one wants to have it, and it isn't fair, it just is.

when did you guys start getting the little pea sized tumors on your skin, cause I have had the same ones for a couple of years and there is about 8 of them................I just want to know how fast it is...I M SO FRUSTERATED today, I have done nothing but cry!! but on a brighter note I think everyone here is wonderful, you guys really understand!!Thank-you

Part of the problem with NF is that it is different for each person. Some of us only get bumps on the outside, others only get them on the inside. You may never get anymore than you have now. Or you may get many more. Docs don't have a clue what exactly causes the bumps. It could be environmental like stress, or it could be nutritional, I have heard things about vitamin D and propolis, both of which I take daily as well as using a vitamin D cream. Sometimes I stare at the ones on my arm, and just wonder, why a tumor right here, and not here, why do I have a lot more and smaller tumors on the left side rather than the left. So much we don't know. And don't let a doc tell you he/she is as expert and knows everything about it, because they don't. No one does.

trust me, I know how you feel. but everybody has something....we better thank God we can get up and move around. I hate it just as much as everybody else.. i cry at times too, but thats not gonna remove them.....I hate the fact that its gonna be there forever. and Im scared of the future as well

marah is absolutely right that NF affects everyone differently. and that eventually you do stop thinking about it every day. you realize that there are too many other things in your life that are so much more important. I am at least 5th generation in my family to have NF, it could go back even longer than that, but thats as far as i have been able to trace it. but as far as i know not one of us is affected the same way. I have always had a couple pea sized bumps either on or under my skin. but my NF mostly affected the bones in my face, and caused me to lose the vision in my left eye. I often wonder why it had to be me who has NF and why not my brother. or why I couldn't have a milder case. the best thing you can do for yourself it to research as much as you can about NF there is comfort in knowledge and understanding. ~hugs~

Hiya hun

I hope you are feeling better soon. Firstly you are certainly not suffering from a disease, you simply have a genetic disorder. You are not a diseased person and no one with catch anything when they are next to you!! You sound like a very mild case, I do was approximately 31 when I was diagnosed. I have the cafe au lait marks and the tumors. I was always told the cafe au lait marks were birthmarks and that the lumps were, well some people are lumpy and some are not!! As has been said NF affects each individual different. Both my children also have NF. The eldest mild but my youngest much more serious. Do not let it beat you down, you are miles better than that. Things could be so much worse. Just continue being you for you and not the genetic disorder that you have, you have it but it does not have you. Hugs to you my dear.

hi
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also feel bad today one of my twin boys has to go for a mri scan on mondayHe has been getting bad pains in his head.just wanted to let you know yiur not all alone