News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search


Official launch of Ehlers-Danlos Society New Zealand

22 March 2019

The Ehlers-Danlos Society New Zealand (EDSNZ) will officially launch on 18 March 2019.

The Ehlers-Danlos Syndromes (EDS) are a group of 13 sub-types of a genetic disorder that affects connective tissue, and also includes another associated disorder, Hypermobility Spectrum Disorder (HSD). Connective tissue serves as the building blocks of the body, and supports skin, bones, blood vessels, and many other organs and tissues. The most common types of EDS usually results in joint hypermobility, frequent joint dislocations, chronic pain, easy bruising, and gastrointestinal issues. The most dangerous type, Vascular EDS (vEDS), may cause spontaneous artery or organ rupture, sometimes causing premature death.

Although most types of EDS are rare or extremely rare, the most common type, Hypermobile EDS (hEDS) is currently known to occur in 1 in 2,500-5,000 people. Current research however, may soon prove it is more common than this.

Unfortunately, it is typical for it to take many years, and sometimes decades for an EDS patient to receive a proper diagnosis. Once they receive that diagnosis, it may be difficult to find proper care, management and support.

The registered charity Ehlers-Danlos Society New Zealand was created to help support patients and families who are diagnosed with EDS, or in the process of receiving a diagnosis.. Society president, Kelly McQuinlan, states, “It is crucial that we connect health professionals, employers, educators and the general public with the correct information, so that EDS patients and their families receive appropriate care and experience increased well-being”.

Read here for a greater understanding of EDS

Internationally, the rare diseases community uses a zebra as its mascot to represent their condition. In their medical training, doctors are taught that when they hear hoof beats to think of common horses, not the rarer zebra. However, they also need to be on the lookout for rarer diseases. As every Zebra has different stripes, each EDS patient may have a different set and severity of symptoms.

For more information, or to make a donation, visit the EDSNZ website at


© Scoop Media

Culture Headlines | Health Headlines | Education Headlines


Facebook Announces New Changes: Combating Hate And Extremism

Some of these changes predate the tragic terrorist attack in Christchurch, New Zealand, but that attack, and the global response to it in the form of the Christchurch Call to Action, has strongly influenced the recent updates to our policies and their enforcement. More>>

Amazon Confirms: Lord Of The Rings Series To Shoot In NZ

Amazon Studios announced today that its series based on J.R.R. Tolkien’s iconic fantasy novels The Lord of the Rings will shoot in New Zealand. Pre-production has started, and production on the series will begin in Auckland in the coming months. More>>


Birds: Dunedin's Bells Ring As City Celebrates Its Albatross

The city's churches, schools and public buildings bells would chime in unison from 1pm, in what has been a long-standing tradition marking the return of the birds - and a farewell to this season's albatross chicks. More>>

Oscar Buzz: Waititi's Jojo Rabbit Wins People's Choice Award At Toronto

Taika Waititi's new film Jojo Rabbit has nabbed the coveted Grolsch People's Choice Award at the close of Toronto International Film Festival. More>>


Broken Estate: An Expat Expert Surveys Our Media

Melanie Bunce cut her teeth in journalism at the Otago Daily Times. Now she teaches and researches it at one of the UK’s most prestigious journalism schools and tracks the trends that shape the uncertain future of news... More>>



  • Wellington
  • Christchurch
  • Auckland