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Living with Neurofibromatosis

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Neurofibromatosis
by: Tracy on Mon, Oct 15 2007
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I am writing this article because of NF. I am 41 years of age and have 2 sons, but only one along with myself that has been diagnosed with this disease. The thing is I am not sure rather we have NF 1 or 2 or maybe even something I rescently read about called Schwannomatosis that is even more rare.

I have also been diagnosed with a tpe of neuropathy I am not in a area where there is a geneticist available so I have to travel about 240 to 300 miles plus to get to one of them. I have been to two of then, one in Atlanta Ga. and one IN Augusta Ga., they both say I have NF, and the one I Augusta says my 13 year old son has it as well, which is really how I found out I had this disease.

I’d like to be able to reach out to others dealing with these conditions because I know of no one in my family or area for that matter that has this disease. My son so far is doing ok , I on the other hand am having some difficulties. I am hoping for a breakthrough in disease like many other diseases the medical field is trying to tackle. I don’t want my children to have to deal with this or any future generations of mine.

I would gladly like to be able to communicate with anyone who deals with this condition. Thank each of you for taking time to read this article and God bless each and everyone of you.
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Comments
  1. Wed, Jul 23 2008
    Hi have you been to the NF support group? its on line..Please try it many other people just like yourself are going through the same thing. Its a go...Read
  2. Mon, Jan 14 2008
    I'm also 43 w/ NF. The bumps increases in numbers when I got pregnant. I have it on my face, forehead, neck, hands, fingers, feet and toes now. I have...Read
  3. Wed, Dec 19 2007
    My best friend of 27 years has NF1. I can remember her having severe migraines all through school. Now she has 5 children. The oldest daughter who is ...Read
  4. Tue, Nov 20 2007
    I will be 43 I have types of NF I have an extremely large plexiform and small ones all over then tiny ones everywhere even on my hands and feet I suf...Read
  5. Sun, Nov 18 2007
    Hi,I live in Ga. and have no insurance to cover bills from doctors.The tumors I have are all through my body at least 40 of them the size of silver do...Read

October 2007

  • Neurofibromatosis - by Tracy - (Mon, Oct 15 2007)
    I am writing this article because of NF. I am 41 years of age and have 2 sons, but only one along with myself that has been diagnosed with this disease. The thing is I am not sure rather we have NF 1 or 2 or maybe even something I rescently read about called Schwannomatosis that is even more rare. [more..]

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