01 May 2019

EDS Awareness Month

As this month (May) is EDS awareness month I thought I'd put together a post explaining what EDS is, how it can affect its sufferers and some of the ways it affects me personally.

As an EDS warrior myself this is a very important month to me as raising awareness is so important because this condition is rare and is often missed by doctors so patients often go misdiagnosed or undiagnosed completely for many years.

EDS (Ehlers Danlos Syndrome) is a rare connective tissue disorder that causes the body to produce faulty collagen. Collagen is the 'glue' that holds our body together and is found all throughout the body. In our ligaments, muscles, joints, organs, eyes... This faulty collagen weakens the tissues that supports the skin, bones, blood vessels, arteries, internal organs and more.

There are 6 'main' types of EDS (these are the most common types). These are; Hypermobile Type, Classical Type, Vascular Type, Kyphoscoliosis Type, Arthrochalasia Type and Dermatosparaxis Type. Though I've only listed the names of 6 types of EDS there's actually 13 known types of EDS that have been discovered (so far) though the other 7 are extremely rare.

Symptoms vary depending on which type of EDS you have and no two people have exactly the same symptoms but a few of the most common symptoms are; hypermobile joints, soft velvety skin, easy bruising, poor wound healing, abnormal scarring, joint dislocations/subluxations, chronic pain, stretchy skin and many more. Common comorbidities (Secondary Conditions) are; Chiari Malformation, TMJ, POTS, Dysautonomia and CCI. (This list may not reflect every sufferers experience because as mentioned above, every suffer is affected differently and no two people have exactly the same symptoms- part of why EDS is often missed).


Some of the symptoms I personally experience are; chronic pain, easy bruising, fatigue, gastrointestinal problems (including nausea, acid reflux, cramps and early satiety), hyperextension of various joints, hypermobility in numerous joints throughout my body, dizziness, poor proprioception, subluxations/dislocations, soft velvety skin, tachycardia and urinary incontinence. (This list is in no particular order and is not a complete list of my symptoms).

"With research, possibilities are limitless"

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