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Individuals with EDS have a defect in their connective tissue, the tissue that 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
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there is only one test for one of the nine types of EDS - a test for EDS type 4. it is actually hard to find someone knowledgeable enough to store and prepare and ship the sample (all insurance considerations aide).
From an health insurance POV, you might find that they do not make much distinction between BJHS and other forms of EDS. The best way to avoid health insurance problems is to make certain you have no time gaps in your insurance coverage.
http://www.ahrq.gov/consumer/insuranceqa/insuranceqa10.htm
http://www.stretcher.com/stories/990111b.cfm
Life insurance of course is another matter - and again BJHS and EDS are often treated the same. If you fail to disclose BJHS, your family could find your life insurance claims denied (and all your premiums forfeit). the good news is that you (or a spouse/parent) can get you life insurance under an employer group policy even with a pre-existing condition.
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