EDS Awareness Month 2016 – Richard Lynch pictured above with Zondra Meaney and her mother Dorothy. Picture: Dolf Patijn/ilovelimerick
May is EDS Awareness month. Throughout this month Irish EDS and HMS look forward to giving people the facts about Ehlers Danlos Syndrome\ Hypermobility Syndromes, as well as personal perspectives from people living with these conditions.
HMS, or Hypermobility Syndromes, is an umbrella term for a group of potentially life-affecting medical conditions of hypermobility. One such condition, EDS, is a rare connective tissue disorder which occurs in approximately 1 in 5,000 people, The condition can affect every system in the body leading to a wide range of apparently unconnected symptoms including joint pain and hypermobility, chronic fatigue, gastrointestinal issues and heart complications. Symptoms can vary from mild to life threatening.
The other important message for the month of May is to highlight that people who live with EDS are being overlooked in Ireland. Large numbers of Irish people diagnosed with EDS are forced to not only travel but to fund their own treatments abroad. This month Irish EDS and HMS want to take a step in the right direction and have the term of eligibility for the Treatment Abroad Scheme (TAS) to be broadcasted for people with EDS/HMS in absence of the appropriate and required treatment here in Ireland.
One of these people is a young Limerick woman called Zondra Meaney, who works tirelessly to highlight awareness of EDS.
Zondra’s good friend Limerick lady Amanda Corbett died from symptoms of EDS in December 2011, at the age of 27, having just been diagnosed with the disorder at 20. The young mother of one suffered with an extreme vascular form of the disease and her passing inspired Zondra to take a stand in the fight against the disease.
Zondra has EDS and spends a lot of time working towards raising awareness about EDS. “My care here in Ireland is very good, but to get the good care here I had to go to London first and I still have to go there. Also to get the care I needed I had to get to my lowest and most ill moment. No patient should have to end up at their lowest,” explained Zondra.
“For the last few years we have been heavily focused on spreading awareness among the community, but now it is about spreading awareness among the medical community. It important that patients here can get treatment here and that doctors will know what it is that is wrong with their patients and know what to look for.”
“Patients go abroad only to return here and have no after care. The main aim and main change needed is to spread awareness in the medical community,” adds Zondra.
An International Symposium on Ehlers Danlos Syndrome is being held in New York City during the first week of May. The primary goal of this is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.
This is an exciting project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally the EDS community will have the foundations they need to ensure more research, funding and recognition.
Irish EDS&HMS were thrilled to receive an email offering them a place at the Symposium. They had planned to fund an Irish Consultant/Specialist Registrar to attend this Symposium, to be at the front end of the information and decisions being made. The initiative however was sadly refused by the HSE, so an Irish Doctor will not be attending the Symposium this May.
For people living with EDS in Ireland this opportunity is one too costly to be missed. EDS Ireland will continue their efforts and reallocate funds raised so far to send a medical representative to the subsequent briefing session in Baltimore in July instead. Please lend your support if you can.