May I invite you to a new community?alilbitMarch 12 2004, 16:42:48 UTC
Hello, My name is Elizabeth, my daughter has had cafe-au-lait spots all her life. The specialist attending her birth said that they were nothing to worry about and that they would keep an eye on them. She has learning difficulties and can be very emotional. The most information I've recieved from family doctors is that it is not rare and hasn't been closely studied, it's genetic and there is 50% chance she will pass it on. I've decided to take a closer look, and what I have found so far has been frightening. I need support, and I want to be a knowledgable support to my daughter, I need more information especially regarding personal experiences and successes. An search on LJ turned up 27 people with neurofibromatosis in their interest list. I'm inviting these people to join a community I have created. I am hoping that the members of nf_info_support that do have nf will share their experiences, frustrations, and especially successes, and that those of the membership that are joined as support to friend or family member(s) may discover new ways to be
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My name is Elizabeth, my daughter has had cafe-au-lait spots all her life. The specialist attending her birth said that they were nothing to worry about and that they would keep an eye on them. She has learning difficulties and can be very emotional. The most information I've recieved from family doctors is that it is not rare and hasn't been closely studied, it's genetic and there is 50% chance she will pass it on. I've decided to take a closer look, and what I have found so far has been frightening. I need support, and I want to be a knowledgable support to my daughter, I need more information especially regarding personal experiences and successes. An search on LJ turned up 27 people with neurofibromatosis in their interest list. I'm inviting these people to join a community I have created. I am hoping that the members of nf_info_support that do have nf will share their experiences, frustrations, and especially successes, and that those of the membership that are joined as support to friend or family member(s) may discover new ways to be ( ... )
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