May Is Ehlers Danlos Syndrome Awareness Month in Ireland
We are recognizing May as the world-wide EDS Awareness month.
“A new drive to raise awareness of Ehlers Danlos Syndrome (EDS) began this week and will run throughout May. A disorder of the connective tissue, EDS is a rare, lifelong, progressive disease that often goes undiagnosed, leaving sufferers desperate for answers.
In Ireland, there is an estimated 918 people living with EDS, 231 of whom are now members of EDS Awareness Ireland (EDSAI). Although many of them look incredibly healthy, the reality is, day-to-day life is a struggle as one of the main symptoms of EDS is partial dislocations due to unstable joints.
“It is overdue for EDS to be recognised in Ireland as a legitimate condition.” explains Chairperson of EDSAI, Natalie Murphy, an EDS sufferer. “During the month of May we hope to raise awareness of EDS and push towards greater education, which will empower our Irish members and their healthcare teams on their journey forward. We are genetically rare, but collectively common.”
Many EDS sufferers have applied for the Treatment Abroad Scheme only to be denied by the Irish Government. This is just one of the many hurdles Irish patients have to get through. On a daily basis, those with EDS often have to fight for treatment and to have their syndrome recognised by doctors.
To find out more about EDS or to join EDS Awareness Ireland, visit facebook.com/EDSAwarenessIreland.
What is Ehlers–Danlos Syndrome?
Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues. The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring.”
During May tell someone about this genetic disorder called Ehlers-Danlos Syndrome. Our goal is to educate the public about this really “not so rare” condition.
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