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EDS


Radha
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Hi Radha,

In a nutshell: (quoting first paragraph from EDNF information):

"Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue."

EDS (Ehlers Danlos Syndrome) is a genetic abnormality that gives the person faulty collagen which causes a whole host of problems for the person which can effect your whole body system. It is usually diagnosed by a Geneticist or a rheumologist who is aware of this problem, as not all are educated enough about EDS to diagnose it.

Anyway, the term loose joints are not just the single determining factor in EDS, it a combination of things that they look for such as how many and what joints are loose and just how loose is loose. Also stretchy skin or velvet like skin and other skin problems such as easy bruising and paper thin scarring that occurs over nothing, slow healing etc, tissue fatigability, chronic fatigue and orthostatic problems, intestinal problems, history of migraines, etc. You heart valves and aorta can be affected depending on the person?s severity and what type of EDS you have. Ehlers Danlos Syndrome has six major types. Some types can be deadly and can affect the major organs and intestines that can rupture. MVP can also be a problem with EDS.

The hypermobility type or type III, which is the most common type I believe, can display chronic and debilitating painful joints (multiple) and some have stretchy skin that feels very dough like with this type and some do not but the painful joints can be awful and keep many people from functioning.

The doctors will look for how many joints and just how far a person can bend or go beyond what is a normal range of motion without much effort or pain. When a person has EDS they can usually stretch their joints and move their joints grossly out of range of what is considered normal. They can also experience dislocations & subluxations on a daily basis without pain (unless a nerve is pinched) that would put any other person in the hospital on sedation for reduction. They can just pop it back in usually themselves with no effort. They will also experience stiffness as well sometimes depending on the person and what damage has been done to the joints over time as osteoarthritis will set in over time.

The treatment is lengthy and complex and requires a combination of things such as PT, medications, splinting, lifestyle changes, etc.

The best source for knowledge of Ehlers Danlos Syndrome is http://www.ednf.org/index.html

They have a ton of information.

Hope this helps you and doesn't overwhelm too much

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Sally gave you all the pertinent links.

Michelle and I both have EDS type III. Type III is diagnosed by the "Beighton Scale", which is a test of flexibility for certain joints. For other types of EDS, there are genetic tests, but type III doesn't yet have a reliable genetic test to identify it.

Nina

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the rheumatologist i saw didnt really even consider the possibility of EDS, he just said there's no treatment for it and dismissed my question, i live in a small town and no one really to ask about this, so how do i find out if i have EDS? so confused, and cant travel, thanks

radha

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