new community noticealilbitMarch 12 2004, 22:33:12 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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Hey, can I friend you and get added to your friends list? (I'm the one that replied in the mormon community)...I read your profile and we have a ton in common. :) And not all is contained in my profile, either. Plus your post in the community, I can relate to a lot of. I noticed in your profile that you like SF, too. If you decide to end up staying here (not that I'd blame you if you didn't, heh), I am involved with BYU's science fiction symposium, so...you're welcome to hang out with me/us/whatever as long as you're here so you don't feel so alone, if you feel inclined to hang out with part of the geekish community. I totally know a lot of what you're saying about BYU. Too much...superficiality?, people pretending to be perfect.
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Well. It's better then being part of the crowd." your so right you know!!
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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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