EDS: Pictures and Types

[Guest guest]

This is an excellent link which shows pictures of some of the manifestations of Ehlers-Danlos Syndrome. Yes, I can really actually do some of these "parlor tricks", as we EDSer'scall them. We EDSer's know, however, that these very popular and attention getting "parlor tricks" which most all of us did as kids and even as adults are truly very dangerous and injurious to our already too stretchy collagen and connective tissue. With each and ever "parlor trick" of hyperextending the skin, subluxing/dislocating a joint, we are stretching the tissue which holds the joint in place farther and farther.......until finally, like a stretched out rubber band, it just isn't able to hold the joint in place any longer. Then, sadly, often a custom brace or even a permanent surgical fusion is necessary. However, bear in mind that EDS can and does effect each victim in many degrees of severity, and in many people who have it, others wouldn't ever know or notice it. In others, like me, it is severe and debilitating and very progressive. Just like my recent report from the NIH in Baltimore where the boys and I spent 3 days this past June participating in the clinical trial study there on EDS, Marfans, Sticklers Syndrome, and other connective tissue disorders, "there is no known cure, and none expected." Believe me, that is a difficult statement to read when you know they're talking about you. This link also gives a very good, concise summary of the different types of EDS and their basic characteristics. We with "loose connections" seek to educate others one person, one opportunity at a time. Since EDS is still listed with NORD (National Organization for Rare Diseases), unfortunately there are still soooooo many in the medical field (including specialists!) who have little or no knowledge of this genetic disorder which afflicts millions of people. Many medical schools are still teaching med students that they will probably never actually see a patient with EDS....TOTALLY FALSE!! That is why we are so misdiagnosed and under diagnosed. The NIH study hopes, as one of its very good goals, to help change that by revisiting the issue of prevalence. God bless them for their efforts. I thank you in advance for checking this link out. If you have any questions about Ehlers-Danlos Syndrome, please feel welcome to email and ask me. Also, good reputable organizations are:

EHLERS-DANLOS NATIONAL FOUNDATION (www.ednf.org)

CANADIAN EHLERS-DANLOS ASSOCIATION (www.ceda.org)

Here's the link:

http://www.skinatlas.com/eds.htm