Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Hi I think that awareness is a good thing, since you can apply all the things you learn about looking after Petra, to yourself. I saw that you are going to a genetics appointment with Petra next month....I would guess that the geneticist you see would also discuss a possible diagnosis with you as well, this is certainly my experience. Have you been asked to take family medical information or a family tree with you to your appointment. A lot of geneticists ask you to prepare this in advance, but others try to do it on the spot. I think this can be a problem, since it can be very difficult to remember all that stuff on the spot. Something I have been doing for people on another list is drawing their family tree's for them to take to their appointments. I use Word. I also help them organise their medical history into a more cohesive form. I dont presume to second guess the doctors...I just make it all nice and consistent and do the chart to help the appointment go more smoothly. If you're interested, I'm happy to do yours. Let me know, and I'll let you know what you need to send me. So far as your future condition is concerned, EDS is notoriously unpredictable...some people never get worse, others get progressively worse, and others are fine for many years then get suddenly worse. Sometimes things like puberty, pregnancy and menopause seem to affect the severity....some women get either better or worse during these periods of their lives. This is why prevention is so important...you just dont know how things will turn out. Love Glenda millgate@... Quote Link to comment Share on other sites More sharing options...
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