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Neurofibromatosis.....?????


Not sure what type neurofibromatosis i have but my sis has it also along with my mom, aunts (her 2 sis) and their mom but her bro doesnt have it, my sis case is the worse of them all, why is it only the females got it? i know its a 50 - 50 chance of me passing it on to my kids is there anythin out there yet to prevent it????

had some of the tumors removed and they have been non cancerous but they keep coming back and i keep getting more :(

I have it as well as my Mother had it, and her mother my Grandmother had it, one of my Grandmothers sisters had it. My mother only had one brother who had it. My son's do not have it. I have 2 son's. But I have told my grandchildren that this is in the family. We have type 1 because it was disclosed when I was small. They can tell by the freckles in the groin and under the arm pits.The tumors are as a rule not cancerous.However as you know they can become cancerous, or may never become cancerous. I keep getting more and more as I age. Some do not know until they are teenagers. When the tumors start to show.

"is there anythin out there yet to prevent it????"

Adoption is the only preventative measure.

hi,
i am a doctor.
neurofibromatosis is an autosomally dominant condition which has a variability expresed in generation to generation.
that means that every person in the famliy would not get in the same way.
so, eventhougth the disease transmits to one generation to the other, there may be a difference in the way it is expressed in each member..
sometimes there may be an increased chance of it been expressed in females.
sadly there is no method to prevent it as such becuase there is a 50- 50 chance..
but the good news is that it may be expressed in a milder form in your children.

if you need further info, feel free to visit our site
www.medicguide.org
this a free site run by doctors to answer your health queries for free.

You can do PGD, preimplantation genetic diagnosis. It'll require you to do IVF, in-vitro fertilization. This is possible now because lots of the genetic mutations that causes NF have been mapped. There are small percentage of mutations that haven't been mapped, so if you happen to fall in that small percentage, PGD wouldn't work.

But unlike a couple of years ago, it is possible to lessen the chance of passing on NF. It's not a guarantee though

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