What is EDS?
People with any form of 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 acts as a “glue” in the body, adding strength and elasticity to connective tissue.
EDS is a group of heritable connective tissue disorders that cause join pain, hypermobility, stretchy skin, and fragile tissues (adapted from EDNF.org).
I have Hypermobility type EDS (formerly EDS III), which means that my ligaments aren’t strong enough to hold any of my joints in place. This lack of overall stability causes chronic pain that usually manifests at night, after my ligaments have had too much work, and also results in frequent dislocations or subluxations, where the joint slips around and either fully or partially moves out of place. Hypermobility type EDS is not life-threatening, but other types of EDS can cause the tissue surrounding internal organs to be particularly fragile and thus susceptible to rupture.
These are resources that I turn to almost every day and would highly recommend them to anyone seeking a diagnosis, living with EDS, or trying to understand this complex disorder for a loved one.
The EDNF website contains the most up-to-date links, .pdfs, and conference findings on EDS and its symptoms.
The EDS Inspire community is home to some of the kindest, most supportive people I have spoken with online. With the help of people who had gone through the diagnosis process already, I was able to gather enough information for my doctor to give me my final diagnosis. Whatever your symptoms, questions, or fears, there is someone on this site who is willing to help!
While not a resource devoted specifically to EDS, this site offers a humorous look at the world of chronic illness and has helped me deal with many inevitable conversations about my lifestyle and pain. There is also a free message board that, though not used as frequently as Inspire, provides a good sounding board for ideas and troubles.
Dr. Tinkle is one of the world’s foremost authorities on EDS Hypermobility type, which is the type I have. I found this book to be quite helpful in explaining EDS to my family and friends, and it provides some good tips on pain management (that I keep forgetting to use…).
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