Wednesday, May 15, 2013

7. EDS Basics

What is EDS?
EDS stands for Ehlers-Danlos Syndrome. EDS is a genetic mutation that causes a person's collagen to be faulty (EDNF, 2012). Collagen is the material that essentially holds the body together. This is often called connective tissue and is a set of proteins that discern the strength and plasticity of certain tissues in the body (Mayo Clinic, 2013). EDS is often coined a "connective tissue" disorder for this reason. EDS is rare and is thought to affect 1 in 25,000 people. EDS is usually diagnosed by a rheumatologist or geneticist.

The first symptom most people with EDS notice is pain in the joints. This is caused by joints that are hypermobile--meaning they stretch well beyond the range of motion most normal people's joints do. This is because the connective tissue that holds the joints in place is faulty. Once this tissue is stretched out, it does not rebound. It stays stretched out which leads to multiple and repeating dislocations and sublaxations of the joints.

Hypermobility is determined by the Brighton Criteria and the Beighton Scale (don't confuse the two names, there is a difference). The Beighton scale is below.


This illustrates just a few of the ways that joints may be hypermobile and focuses on the main joint. Other joints such as the ribs, can dislocate. There are over 200 joints in the human body and someone with EDS can dislocate them all leading to severe and chronic pain (EDS Network C.A.R.E.S. Inc, 2010).

The diagnosis of hypermobility is made after checking the Brighton Criteria below.

These criteria help a rheumatologist or geneticist make a diagnosis of EDS. From there the diagnosis process gets even more complicated. There are several different types of EDS include a very dangerous form of Vascular EDS. I do not yet know which type I am.

People with EDS have very soft, velvety skin. This skin is easily broken and torn and tends to heal slowly. People with EDS bruise easily and form noticeable scars. The skin is also very stretchy as a result of faulty collagen (Mayo Clinic, 2013).

Other Symptoms
Because EDS affects connective tissue there can be issues with the respiratory system, gastrointestinal system, cardiovascular system and other organ systems. Other common problems associated with EDS include

This is only the start of the list.

It isn't hard to understand why people suffering from EDS would deal with chronic fatigue. A person with EDS has to work 3-4 times harder than the average person to simply carry out everyday tasks like cooking, dressing, and driving. Our muscles have to work that much harder to hold our joints in place. Chronic fatigue also goes hand in hand with chronic pain which almost everyone with EDS experiences. Often chronic pain makes sleep difficult leading to chronic fatigue and tiredness.

May is EDS awareness month so spread the word. It is often misdiagnosed as Fibromyalgia or Chronic Fatigue Syndrome. For me, the misdiagnosis was lupus. It is a rare disorder and as a result people with EDS battle against doctors and nurses who poo-poo our pain, accuse us of being drug seeking addicts, and tell us it's all in our head. If the world can be more educated about the disorder, a major part of our battle will be won.

EDNF. (2013). What is EDS? Ehlers-Danlos National Foundation. Retrieved from

EDS C.A.R.E.S. Inc. (2010). EDS Hypermobility Type. Retreived from

Mayo Clinic (2013). Ehlers-Danlos Syndrom. Retrieved from

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