Ehlers- Danlos Society New Zealand

The Ehlers-Danlos syndromes (EDS) is a group of connective tissue disorders that affects 1:2500 people for the most common type (hEDS).

EDS is currently classified as a rare disorder, but is likely to affect more people world-wide than previously thought, and is more likely ‘rarely diagnosed’. In the past it has been sometimes difficult to get a diagnosis, but this is gradually changing due to more awareness and education of the condition.

Collagen effects the entire body, and is the glue that holds ligaments, tendons and fascia together. People with this connective tissue disorder are often known as having hypermobile joints and many are extremely flexible. Some rarer types of EDS present with very stretchy skin, and can have other symptoms such as chronic pain, chronic fatigue, multiple joint dislocations or subluxations, multiple organ failures/prolapses, poor healing, and other comorbidities (concurrent symptoms). No one person with EDS will present exactly the same as another.

Often patients are undiagnosed, misdiagnosed, or told that that their condition is psychological, or caused by stress.

The main goal of the Society is to create awareness and education, and connect people to the appropriate services in their region.

Previously, there was no official organisation for EDS in New Zealand, and therefore patients had limited resources or places to go to access support.

The Society was officially registered in 2018 under Ehlers-Danlos Society New Zealand Incorporated, 2704932, and we are also a registered charity CC55826.