Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 My fellow EDSers, Some of you may already know that I have been writing a book entitled Living with Ehlers Danlos Syndrome. Progress has been slow, and sometimes halted temporarily due to my own progression of EDS manifestations and medical issues (and my EDSer sons' as well). However, I am still working on it. I still want to include any information from other EDSer's which you might like to volunteer. I can use your name (first, last, both: your pick) or not (your call). It is to be a very " human " book of personal experiences and coping tools. Another dear wonderful EDSer friend, " Cindylouwho " , aptly suggested that I ask each of you the following question: What would you really like you family to understand about you and how EDS affects you? Love, ~LoneStarRose~ (~~) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 From: ~Lonestar Rose~ My fellow EDSers, What would you really like you family to understand about you and how EDS affects you?~LoneStarRose~ (~~) **************************************************** Hi , I started working on this and realized, I dont know how you want this to be written. Do you want just an answer to the above question? Or a little background on the person and the family? And how long is too long? (I think I was getting carried away with mine)<G> Also me being the mom with a child that has it, do you want how I feel? How it has affected me? I guess I need to know what form or content you would like this in. An answer or a little story?. Cindylouwho Quote Link to comment Share on other sites More sharing options...
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