10 Myths About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome, or EDS, is a group of inherited disorders that weaken connective tissues in the body, mainly the joints, skin and blood vessels. Unfortunately, most people are not familiar with EDS and its symptoms, so dissecting the facts from falsehoods is difficult. Ten common myths about EDS include the following:

Myth 1: If a person does not have stretchy skin, they cannot have EDS.

The skin is affected with many, but not all, types of EDS. When it is affected, stretchy skin is most often found with classical-type EDS. Other types can lead to skin that is velvety, translucent, or prone to bruising or scarring, but the skin may not be highly elastic.

Myth 2: EDS is not a serious condition. It just means a person is extra flexible.

When connective tissues are too flexible, it can lead to joint dislocations and subluxations that cause pain and joint damage. EDS skin complications can cause wounds to heal slower than usual. In vascular types of EDS, arteries and certain organs become fragile and prone to rupture.

Myth 3: EDS is always passed from one parent to a child.

While some types of EDS are directly passed from one parent to a child, this is not true for all types. For several types of EDS, the gene is recessive, meaning that a child must inherit two copies of the mutation, one from each parent, in order for the trait to be expressed.

Myth 4: Dislocations and subluxations do not hurt people with EDS.

A person’s flexibility and the frequency with which joints dislocate or sublux do not decrease or eliminate pain. In fact, recurrent dislocations can cause chronic joint pain.

Myth 5: Classical EDS is the most common type of EDS.

Classical EDS was the first type of EDS recognized, originally known as type I and type II. However, the most common type of EDS is the hypermobility type, which occurs in approximately 1 in 5,000 to 20,000 people. Classical EDS is the second most common type, occurring in approximately 1 in 20,000 to 40,000 people.

Myth 6: Genetic testing can always be used to diagnose EDS.

While genetic testing can be used to diagnose several types of EDS, a genetic test for the most common type does not exist. Genetic testing can be used to rule out other types of EDS but cannot be used to specifically diagnose the hypermobility type.

Myth 7: No treatments are available for EDS.

While there is not yet a cure for EDS, treatments are available to reduce or eliminate symptoms. Treatments vary, depending on the type of EDS. Treatment may include physical therapy, pain medications, and assistive devices, such as braces or wheelchairs.

Myth 8: EDS is caused by a mutation in one specific gene.

Mutations in at least 19 genes have been found to cause EDS. Some of these genes provide instructions for the body to make different types of collagen or different proteins that interact with collagen.

Myth 9: Everyone with EDS is tall and thin.

While long fingers and limbs are physical manifestations in a few types of EDS, most types of EDS do not affect height and weight. People with EDS can have any body type or size.

Myth 10: Only certain ethnic groups are affected by EDS.

Anyone can be affected by EDS. Ethnicity, race and gender do not affect the risk of EDS.