Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 I got my computer back on Monday night. Still trying to install my new printer. arrggh!!! Anyone that is new to the lists since Sept, would you please send me your email addresses OFF LINE please? As part of the " repair " of my computer, I lost all of my email addresses, saved email addresses, etc. Fortunately, I HAD backed up my email addies in September, but not since then. I also lost all of the EDS Speech Surveys that people had filled out and sent to me via email. Whoever had done that, could you please send them to me again? Good news - I didn't lose any of my document files or photos on the hard drive. thanks in advance for any help!!! Bonnie Heintskill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Hi A very real concern question..........As I am sure I have posted on this list before, I was recently diagnosed with VEDS and they are still doing testing to isolate the particular gene. Our 13 year old son passed away very suddenly of a ruptured aorta. My question is : How many of those that are diagnosed with VEDS have kids wnd got their kids tested and then told them????? We have a soon to be 17 year old.The genetecist told us to have him tested when we have the isolation......our concerns are this : he is an active hockey player, golfs, and plays in 2 school bands.....how would he react to this , how would it change his life, how could he carry on?????? We are so very confused and really don't know what to do. DO we tell him (if it turns out that way) and scare the poor scare ?, or Do we not and let him live right now as he's always done? I know what I've been like since I've been told and I wish I had never heard of this EDS!!!! I suffer from anxiety and my quality of life has gone downhill. I constantly worry my husband , son family & friends. HELP! HELP! & MORE HELP! Betty Re: need email addresses > Here's my address. > What a pain for you to have the computer problems! > Yech! > I don't do the computer problems stuff. That's why I married a software architect! LOL > Not really. > I really married him so I wouldn't have to do math again! > LOL > (not really!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Hi A very real concern question..........As I am sure I have posted on this list before, I was recently diagnosed with VEDS and they are still doing testing to isolate the particular gene. Our 13 year old son passed away very suddenly of a ruptured aorta. My question is : How many of those that are diagnosed with VEDS have kids wnd got their kids tested and then told them????? We have a soon to be 17 year old.The genetecist told us to have him tested when we have the isolation......our concerns are this : he is an active hockey player, golfs, and plays in 2 school bands.....how would he react to this , how would it change his life, how could he carry on?????? We are so very confused and really don't know what to do. DO we tell him (if it turns out that way) and scare the poor scare ?, or Do we not and let him live right now as he's always done? I know what I've been like since I've been told and I wish I had never heard of this EDS!!!! I suffer from anxiety and my quality of life has gone downhill. I constantly worry my husband , son family & friends. HELP! HELP! & MORE HELP! Betty Re: need email addresses > Here's my address. > What a pain for you to have the computer problems! > Yech! > I don't do the computer problems stuff. That's why I married a software architect! LOL > Not really. > I really married him so I wouldn't have to do math again! > LOL > (not really!) > > > Quote Link to comment Share on other sites More sharing options...
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