Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Hi all, I am new to Ehlers Danlos, but so far have obtained a lot of info about it. I have type III but am a new mosiac for a new type- I think that is what the doc said. Anyway, it affects my organs, especially my heart. Besides all the troubles I have on a daily basis, all of my doctors are saying to rethink having children. All sorts of things could rupture. I have no idea how to approach this with my fiance. Any ideas? And any tips on how to ease some pain in daily activities would help too! Thanks All. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 In a message dated 12/29/03 10:33:07 AM Eastern Standard Time, kjefts@... writes: << malyshka_ahava >> So sorry to hear you have been diagnosed with such a severe form of EDS. Take it from someone who knows. My name is Sue Ginley. This is surely going to be a tough topic with your fiance......but there are options. The best thing to do is talk to your fiance, find out what his thoughts and feelings are on this topic....give him a bit of time to think, and then see the genetic counselor together. They will be able to let you know what your options are, what is best for you, your husband to be, and your future children. Were they able to isolate the gene causing your mutation? Well, for you and your fiance's sake, I hope everything will turn out OK. Please take care and feel free to write anytime. Ginley WNY EDNF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Welcome to the CEDA Site, we are a great family here from ALL over the world (I am From Australia) there are others here from UK, Europe, USA, Canada (of course <he he>) and other places too. I am sad to here that you need to be here, and have been diagnosed with EDS III or as a mosaic for a new form. I am thought to be a type III (HEDS) with some familial Perio-dontal crossover and some toher crossovers as well. I am still trying to get a TRUE diagnosis and help but so far my GP says HEDS and that is what I think too, so that is what I stick with. As to ways to help with daily living and the pain, we are all different for me the things that work are Bracing, medications, rest, hot baths and hot packs (I cannot use Ice due to Raynaud's and RSD), Massage therapy, osteopathy treatments, Mike's accupressue points help too, my medications probably help the most in general pain levels,a dn changing the way I do things and using gadgets designed for the disabled helps as well (The independant living centres here ahve HEAPS of these products), I use ergonomic knives, dysom matting to hold palte and bowls down to stop them slipping, a food processor as chopping, grating and mixing are OUT and other such items to make life easier. Again welcome to you and good luck with your fiance. Sharon > Hi all, I am new to Ehlers Danlos, but so far have obtained a lot of > info about it. I have type III but am a new mosiac for a new type- I > think that is what the doc said. Anyway, it affects my organs, > especially my heart. Besides all the troubles I have on a daily > basis, all of my doctors are saying to rethink having children. All > sorts of things could rupture. I have no idea how to approach this > with my fiance. Any ideas? And any tips on how to ease some pain in > daily activities would help too! > Thanks All. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Welcome to the CEDA Site, we are a great family here from ALL over the world (I am From Australia) there are others here from UK, Europe, USA, Canada (of course <he he>) and other places too. I am sad to here that you need to be here, and have been diagnosed with EDS III or as a mosaic for a new form. I am thought to be a type III (HEDS) with some familial Perio-dontal crossover and some toher crossovers as well. I am still trying to get a TRUE diagnosis and help but so far my GP says HEDS and that is what I think too, so that is what I stick with. As to ways to help with daily living and the pain, we are all different for me the things that work are Bracing, medications, rest, hot baths and hot packs (I cannot use Ice due to Raynaud's and RSD), Massage therapy, osteopathy treatments, Mike's accupressue points help too, my medications probably help the most in general pain levels,a dn changing the way I do things and using gadgets designed for the disabled helps as well (The independant living centres here ahve HEAPS of these products), I use ergonomic knives, dysom matting to hold palte and bowls down to stop them slipping, a food processor as chopping, grating and mixing are OUT and other such items to make life easier. Again welcome to you and good luck with your fiance. Sharon > Hi all, I am new to Ehlers Danlos, but so far have obtained a lot of > info about it. I have type III but am a new mosiac for a new type- I > think that is what the doc said. Anyway, it affects my organs, > especially my heart. Besides all the troubles I have on a daily > basis, all of my doctors are saying to rethink having children. All > sorts of things could rupture. I have no idea how to approach this > with my fiance. Any ideas? And any tips on how to ease some pain in > daily activities would help too! > Thanks All. Quote Link to comment Share on other sites More sharing options...
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