PainChampions (September 15, 2016)

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PainChampions September 15, 2016 September is Pain Awareness Month, and for the next year — through Pain Awareness Month 2017 — The Ehlers-Danlos Society is partnering with The Pain Community to foster awareness of pain in association with Ehlers-Danlos syndromes (EDS), how we can approach treating pain, and along the way, we hope for some advocacy opportunities, too. Each month, we and The Pain Community will share new articles, and continue the conversation. Our project is called “Pain Champions.” Living with chronic Ehlers-Danlos pain is much like living as an athletic champion. Your life is dedicated to training, learning how to get better results from the programs you undertake. Every day efforts lead to better outcomes. Victories are measured most often against your own record; getting better at a sport, or at managing your pain, doesn’t have to involve competition against anyone else. And we hope to help each other find new ways of becoming the best champions we can be. I’m going to talk a little bit about Ehlers-Danlos and pain. There will be more to come in subsequent posts, but an overview might be a helpful beginning. For those of you who aren’t aware, Ehlers-Danlos syndromes are a group of connective tissue disorders which produce a spectrum of complex problems across multiple systems of the body. Most EDS are a distinct problem in making or using one of the types of collagen. Collagen is found throughout the body, and is what the body uses to provide strength and elasticity to tissue. Normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns it to normal. With a badly-constructed or processed collagen, some of the tissue in the EDS-affected body can be pulled beyond normal limits which causes damage. Collagen is the most abundant protein in the body and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on—which means the problems can be widespread, in a wide range of severities, and maybe even show up in places one wouldn’t think are related unless the underlying collagen is considered. The Society’s web site, ehlers-danlos.com, is an ever-growing and improving source of EDS information.


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