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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MORE BUMPS
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EVERYTIME I LOOK AT MYSELF THERE ARE MORE BUMPS. THEY HURT AND I AM SO SICK OF IT. IF THAT ISN'T BAD ENOUGH, POOR SARAH IS GETTING A RASH OF NEW BUMPS. THAT JUST ADDS TO MY GUYLT. I AM JUST SO TIRED OF IT ALL.
Posted on 05/15/08, 10:05 am |
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Oh, I am so sorry about that. This disease or condition or whatever you want to call it just simply sucks! And I am so sick of doctors attitudes about it. Like they just don't see the big deal. Really hope you feel better soon. 
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well i think you can get them surgically removed if they bother you that much. and i think some insurances will pay for it since its congential and causing you pain but dont quote me on that last part. im sorry that you have to go through this!
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My doctor won't even turn it into the insurance, because HE thinks it is cosmetic.
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Bumps suck I know. Some are painfll bu you have to be strong for both your child and yourself.
And you cant count on the doctors because 1/2 the time the doctors has no cue whatt NF is and they have to go look it up on the computer. Then they look at you like theres no way you have that.
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I feel you….even if I know that there’s not much hope for a quick cure….or some magic lotion… …that will make them disappear…there are some doctors out there willing to help…I have heard of a Hubert Weinberg , MD in New York who uses something called …Electro-desiccation…to remove most of those tumors on the face and body…I going to contact him as soon as I save up some vacation time to go see him…..and have it done…and its covered by your insurance….I have had several removed …here where I live …..there is a doctor in Austin Texas…..a James R Cullington who removed a massive tumor I had on my head several years ago…..and it was all covered by my insurance…so although the magic lotion may be far fetch at least there are some doctors willing to help…
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