Find out how you can help – May Awareness Month
This is a worldwide initiative to raise awareness of these syndromes and offer support. They are frequently misdiagnosed or undiagnosed for many years. Awareness and support are vital to all.
These are a group of mostly inherited connective tissue disorders. The main element of connective tissue is collagen. The collagen produced is deficient in strength, is too elastic and breaks easily. Think of an old hair elastic!
Collagen is found throughout the body, often making the disorders multi systemic and causing many seemingly unconnected symptoms.
Some of the common features are joints that move out of place (subluxations and dislocations). Fragile tissues (easy bruising, delayed healing and scarring) and stretchy skin. Chronic pain and fatigue, gut issues, anxiety and depression.
There are many more symptoms linked to each type and each individual.
You may know someone who is looking for answers to a myriad of seemingly unconnected symptoms. They may even have been told:
“It’s in your head!”
“You can’t be in that much pain/that tired.”
“But you look so well!”
“Gosh you’re clumsy/accident prone.”
Worldwide, the mascot for Ehlers Danlos Syndromes is the Zebra. This is because when you hear hoofbeats you expect a horse, not the rarer Zebra. Individual Zebras have their own unique stripes, just as each person with EDS has their own set of symptoms.
Ehlers Danlos Syndromes New Zealand has a striped Kiwi, or Ziwi, as its emblem.
Find out more:
Become a member of EDSNZ – Join Ehlers Danlos NZ
EDSNZ Facebook Support group – Loosely Speaking EDSNZ Facebook Support Group
EDSNZ Support Hub Northland – EDSNZ Northland Support Hub