Hi there
just wondering why is it that the Doctors and everyone in "that" line of work can find medication or what ever to deal with every thing else but NOT NF1/NF2, i mean yeah i am happy that people with cancer can now live longer some get healed and that is great (please do not get me wrong) i am happy that people live longer who are HIV possitive, that is a good thing too, but i am under correction here, why is there nothing that can be done about NF2, my spots and bumps and whatever the hell they are just get more and more obvious to the eye and the public, is there really nothing they can help us with so that the spots (or Spotomotitis) as i call it do not get more, every now and than i get an itch and for sur there wil be another bump, it drives me crazy and some people do not understand.
its just not easy.....and forgive me if i sound harsh (which personally i do not think i do :-) ) but it just is not fair, but than again life is what we make of it.
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Scientists, Doctors anf the like
- By Brown-eyed-girl
- Posted July 30, 2009 at 11:48 am · 6 replies
- In Living with NF2
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- By dragonfly1980
- Posted July 30, 2009 at 11:59 am
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I dont think you are being unfair or selfish. I have had NF 1 all my life and I too am always seeing new tumor growth. I wont even wear shorts any more. I wish they had something to slow down the growth. And even to make my tumors less noticeable. I can understand how you feel.
- By Brown-eyed-girl
- Posted July 30, 2009 at 12:22 pm
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its real good to know i am not the only one who feels like this, some people think i over react but no, they have great skin and have no idea what we go through.
- By dragonfly1980
- Posted July 30, 2009 at 12:27 pm
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I agree. Even the tiny bumps stand out. There is no hiding them , I have tryed amke up and everything. This site is great because we can talk to other people that feel the same , that understand what we are going tho. Someone that is not going to say I understand when th really dont because they dont have to deal with it. Even a mother on here that doesnt have it but her child does seems to understand us better. Because she has to deal with it whit her child. We are all in this together.
- By deafnotdumb
- Posted July 30, 2009 at 9:20 pm
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Hi;
Cures and treatments are being sought.
Chromosomal deletions and mutations and their results are just less easily repairable than other ailments, say, as caused by a virus or bacteria.
The body is attacked in a variety of ways with NF and it's cause. The damage is less easily reversible.
- By tresham
- Posted July 31, 2009 at 4:28 pm
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deafnotdumb has given a pretty good answer.
The gene is so big, and has so many variables it's going to be very hard to find a cure. Just by reading some of the posts here we can see that all of us are affected in many different ways. But they are working on it.
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