What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes, EDS for short, is a collective name for a rare group of hereditary connective tissue disorders. Thirteen different types have been identified. The most common types are Classic EDS (cEDS) and hypermobile EDS (hEDS).

Because EDS consists of thirteen subtypes, the differences in symptoms from patient to patient are very large. The main features of EDS are: hypermobility, stretchy soft skin, connective tissue weakness, bruising easily, and delayed wound healing. Because of these characteristics, pain and fatigue are common complaints.

The degree of severity varies per subtype, but also per person. It is sometimes a difficult task to place someone under one type because there is overlap between different types of EDS, and there are sometimes still limited research possibilities, especially for hypermobile Ehlers-Danlos (hEDS).

EDS is a multi-system disease. This means that the complaints are not only visible in the connective tissue of joints, but throughout the body. There is connective tissue throughout the body, connective tissue that is less well-built up by the EDS. As a result, you often see that other diagnoses arise in addition to EDS, such as heart complaints, digestive disorders, respiratory problems or eye complaints. Recently it has been discovered that due to the instability of the neck a number of neurological complaints arise.

EDS is a chronic condition with a progressive appearance. The congenital abnormality in itself does not increase in severity, but its manifestations do. An accumulation of (sub) luxations, microtrauma or premature osteoarthritis and other additional diagnoses can deteriorate the general condition of a patient further and further. This also means that the complaints may expand and / or worsen while a patient is getting older.