EDS Prognosis

Ehlers-Danlos syndrome (EDS) refers to a group of disorders that affect the cartilage and connective tissue — the tissue that gives organs shape and structure.

What is prognosis?

Disease prognosis is a prediction of the outcome of a disease — the progression of symptoms, and life expectancy. These are predictions based on a population of people with the disease. The more people there are with the disease, the better the predictions are. In the case of rare diseases, there may not be enough data to make a prediction.

The prognosis of EDS varies greatly depending on the specific type of EDS a patient has.

EDS prognosis by disease type

The most common types of EDS (classical, classical-like, and hypermobile) do not greatly affect life expectancy. However, symptoms may become more severe as patients age and joints that have been dislocated multiple times become painful.

Everyone’s bones become weaker with age. In EDS patients with hypermobile joints, weakening bones can make the symptoms of the disease more severe as it progresses. Bones and joints that were previously dislocated may also break more often.

The severe forms of EDS (vascular and cardiac-valvular) can affect lifespan. In these types of EDS, the blood vessels can become weak and easily damaged. Even standing up can cause an internal rupture of blood vessels, and in severe cases, the disease can be life-threatening. Most vascular EDS patients have had a severe event by the time they are 40.

Only a few cases of the rarer forms of EDS (including dermatosparaxis  and musculocontractural) have been reported. It can be hard to predict prognosis for newly diagnosed patients, simply because data are so limited. Based on the evidence currently available, these rare types do not seem to affect lifespan.


Last updated: Feb. 17, 2020


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