Living with NeurofibromatosisThis section is a place to share stories about Living with Neurofibromatosis Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.
You may also Help others by sharing your story. In honor of National Cancer Survivors Day on June 1, 2008, we asked you to share your stories about surviving cancer. Read the inspiring stories we received or share your survival story and help others in the fight against cancer. To quickly access health information from your website's browser, download Neurofibromatosis 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. Comments
October 2007
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