Ehlers-Danlos Syndrome is a seldom-discussed group of conditions that affect the connective tissue of the human body, typically loosening or weakening it. Connective tissue supports and provides flexibility to the skin, tendons, ligaments, bones, blood vessels, and organs.

EDS is generally inherited and is commonly associated with hypermobility, meaning one’s joints can move past their normal range of motion. But hypermobile EDS, or hEDS, which often comes with a higher risk of bruising and injury, is only the most common among the 13 types of EDS, some of which are very rare.

In fact, one of the rare forms of the condition, vascular EDS, can be life-threatening. Here’s all you need to know about Ehlers-Danlos Syndrome.

EDS is caused by certain genetic changes and is generally passed down to children by their parents. These genetic changes affect how one’s body makes and uses collagen, a protein that gives structure and strength to joints, skin, blood vessels, and other tissues.

However, in some people, it can occur randomly due to genetic mutations with no family history of the condition.

The most common form of EDS is hEDS. Hypermobile EDS, like some other types of EDS, presents with symptoms such as stretchy, fragile skin, loose and clicky joints that dislocate easily, joint pain, and joint hypermobility. hEDS may also manifest as extreme fatigue, skin that bruises quickly, digestive issues, and poor bladder control, among other symptoms.

Classical EDS, which is another, less common type of EDS, also exhibits similar symptoms, but it mostly affects the skin. A person with this condition might have very stretchy and fragile skin that bruises easily or splits easily, especially around the elbows, on the forehead, and on the knees. Wounds may also take longer to heal, and they may leave obvious scars.

The rarer form, vascular EDS, affects one’s internal organs. This results in fragile blood vessels that can tear easily and cause internal bleeding, which can be life-threatening. This condition poses a serious risk of bowel tearing, womb tearing during pregnancy, and lung collapse, among others. Pregnant women with EDS must, therefore, discuss this condition with their gynaecologist/obstetrician.

Another type of EDS, called kyphoscoliotic EDS (kEDS), which is also rare, affects the curvature of the spine. It might manifest during early childhood and is also characterised by joint hypermobility and loose joints.

Most people with EDS generally show symptoms of hEDS, which is diagnosed through physical and not genetic testing. It is also important to note that joint hypermobility is common, and it need not necessarily be caused by hEDS; it could also be a result of hypermobility spectrum disorder. Consult a general practitioner, who may refer you to a specialist if you exhibit symptoms of hEDS.

Some of the rarer forms of EDS may be diagnosed through genetic testing.

There is no cure for EDS, but symptoms, especially those of hEDS, can be managed. For some, however, the symptoms can be disabling.

A physiotherapist could help recommend muscle and joint strengthening exercises that could have both short- and long-term benefits. In addition to this, doctors may also recommend pain management and appropriate treatment for bowel-related issues.

Depending on the severity of the condition, persons may have to avoid certain activities, such as weight-lifting or contact sports, that put undue pressure on the joints. However, low-risk activities including swimming and pilates could help individuals stay fit.