Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hi Everyone, I just wanted to say that I think that Joyce is a very brave woman. She is dealing with probably the worst thing a mother could ever have to deal with and she still has the courage and love of others to try to warn us of the seriousness of the conditions we all deal with. I know how unpleasant and down-right scary it is to think that we may have a potentially lethal illness, but as has been stated, the statistics show that the mortality rate for them is very low. However, the very nature of these conditions makes it obvious that occasionally there will be fatalities. The good news is that as the research is growing, more doctors are being made aware of what to do and how to handle us. That translates into fewer deaths. When I was dx in '03, I was told flat out that I needed immediate surgery. Not emergency, but nevertheless, immediate surgery, as I was at a risk for paralysis or death if I had a fall, got a bump on my head, got in a whiplash situation, or even coughed or sneezed too hard! That was scary, but we need to know the truth. Sometimes the truth makes us uncomfortable or afraid, but still we need to know it to make the right choices. I had my surgery 3 months later. I'm not much better, but at least I'm out of that danger. The point of what I'm trying to say is that we, especially those of us that are adults, must realize that these are serious conditions we are dealing with. When one among us has the courage to come forward and share such deep pain to try to warn us, we should embrace her and thank her for her courage and concern for us. Thank you Joyce, from the bottom of my heart. I know that you are trying to raise awareness of this, as I would if I lost my daughter. I admire and appreciate what you are doing. God Bless You and Yours, Suzette Quote Link to comment Share on other sites More sharing options...
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