tag:blogger.com,1999:blog-1791234688533573227.post4102893998318093361..comments2023-06-29T05:37:01.513-07:00Comments on Ehlers-Danlos Syndrome -> Tammy's Story: Too much information, not enough answers.tandrewhttp://www.blogger.com/profile/15490286059965586900noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1791234688533573227.post-16115573135664976042007-02-17T17:26:00.000-08:002007-02-17T17:26:00.000-08:00if you need us at all, call us.. we're good for ri...if you need us at all, call us.. we're good for rides, babysitting etc. know that you are in our thoughts and prayers... we love you!!! danny shelly + megandanny shelly + meganhttps://www.blogger.com/profile/11442120079773805991noreply@blogger.comtag:blogger.com,1999:blog-1791234688533573227.post-79865897318176488432007-02-16T17:22:00.000-08:002007-02-16T17:22:00.000-08:00Scott - thank you for mentioning a medical genetic...Scott - thank you for mentioning a medical geneticist! I looked into it and found that DHMC has a division that specifically mentions Ehlers-Danlos. <BR/><BR/>Margaret - luckily I have a "reasonable" insurance company. Since I am obtaining a referral, all I will have to worry about (at least initially) are the co-pays, but I don't know how much will be covered overall.<BR/><BR/>Christa - I hadn't thought about a dermatologist, but it does make sense. I don't have one and am finding there is a three to four month wait for an appointment. I don't think I have the patience left for that :-)tandrewhttps://www.blogger.com/profile/15490286059965586900noreply@blogger.comtag:blogger.com,1999:blog-1791234688533573227.post-31328061579021412502007-02-15T10:45:00.000-08:002007-02-15T10:45:00.000-08:00My family phys told me to go to a dermatologist fo...My family phys told me to go to a dermatologist for the skin test. The dermatologist has already agreed to do it.Christahttps://www.blogger.com/profile/10803814185562233616noreply@blogger.comtag:blogger.com,1999:blog-1791234688533573227.post-17110613532099858602007-02-14T19:47:00.000-08:002007-02-14T19:47:00.000-08:00It seems as though the skin test mentioned for Vas...It seems as though the skin test mentioned for Vascular EDS would be easily obtained (for suitable definitions of the word "easily"). There didn't seem to be much information about how to diagnose the Hypermobility variant at <A HREF="http://www.ednf.org" REL="nofollow">Ehlers-Danlos National Foundation</A> and since not everyone will display the physical traits of Vascular, I would suggest your nephew be tested for EDS type IV since it is indeed a dominant trait before fearing the worst.<BR/><BR/>I won't even guess at how difficult it would be to convince the insurance companies (even the state CHPS variants) to run these tests. Perhaps there are research protocols out there with which you can become involved?Unknownhttps://www.blogger.com/profile/03797950507942172817noreply@blogger.comtag:blogger.com,1999:blog-1791234688533573227.post-7859708351113001772007-02-14T15:24:00.000-08:002007-02-14T15:24:00.000-08:00you will need to talk to a medical geneticist. yo...you will need to talk to a medical geneticist. your best bet would be dartmouth or boston.Anonymoushttps://www.blogger.com/profile/07259542945083113570noreply@blogger.com