5,000 signatures reached
To: Taoiseach Micheál Martin and Minister for Health Jennifer Carroll MacNeill
Clear diagnosis and treatment pathways for Ehlers Danlos Syndrome in Ireland
Currently there are no designated public consultants, or any type of treatment strategy, for EDS (Ehlers Danlos Syndrome) or HSD (Hypermobility spectrum disorder) patients in Ireland. Not one. Patients are told repeatedly by the HSE that all rheumatologists and physiotherapists are qualified for our condition, but in practice this is certainly not the case. Especially when it cones to initial diagnosis. People suffering with all forms of Ehlers Danlos syndrome need qualified, consultants in this country as well as clear pathways for GP's and rheumatologists to enable diagnosis! No one should not have to pay out of their own pocket to travel to the UK for very basic healthcare.
Why is this important?
Ehlers-Danlos is a complex genetic condition resulting in faulty collagen. Because of this fault, patients' joints can dislocate on a daily basis, leaving us in agony. And that is only the beginning of the catalogue of symptoms that inflict us; some, life threatening.
Early diagnosis and intervention is fundamental for long term prognosis and care, but unfortunately Ireland does not have one, qualified, appointed specialist in the whole country in the public health domain. This has lead to people with EDS/ HSD becoming so de-conditioned, with years of no medical intervention, that they cannot work, function and sometimes cannot walk. Without even initial diagnosis patients have no access to services or care.
About me: My name is Kitty. I'm nearing 40 and a wheelchair user. I was only officially diagnosed in my late 20's, after a life in pain. I saw numerous specialists in various areas, spent my 20's on waiting lists. Some doctors and physiotherapists said they believed I had EDS, yet said they were not qualified to diagnose the condition. I relied heavily on learning about my condition from the community of other patients with EDS/ HSD, and realised my story isn't unique at all. We are not "rare' - we are rarely diagnosed.
Once diagnosed it's nearly impossible to find a qualified physiotherapist, like with everything it is an Eircode lottery. We get no where on the treatment abroad scheme (especially in cases to see consultants) and as the main UK Hypermobility clinics are private this is automatically excludes us from the scheme. The HSE pretend we do not exist, quoting ridiculous numbers when asked how many of us there are in the country!
My story isn't special, or unique -it's a very similar story for most patients in Ireland with these conditions. This cannot continue. People are literally being left to rot. Parents are forced to fund their children's healthcare instead of their own, because they often cannot afford to do both (as these are genetic conditions). We cannot let another generation of EDS and HSD patients go undiagnosed and untreated. Please support our campaign - Sign up the petition and share on social media. Follow us on Facebook and Instagram.
♡ www.eds4ire.ie
♡ https://www.facebook.com/eds4ire
♡ https://www.instagram.com/eds4ire
♡ https://www.youtube.com/kittycolberteds4ire
Early diagnosis and intervention is fundamental for long term prognosis and care, but unfortunately Ireland does not have one, qualified, appointed specialist in the whole country in the public health domain. This has lead to people with EDS/ HSD becoming so de-conditioned, with years of no medical intervention, that they cannot work, function and sometimes cannot walk. Without even initial diagnosis patients have no access to services or care.
About me: My name is Kitty. I'm nearing 40 and a wheelchair user. I was only officially diagnosed in my late 20's, after a life in pain. I saw numerous specialists in various areas, spent my 20's on waiting lists. Some doctors and physiotherapists said they believed I had EDS, yet said they were not qualified to diagnose the condition. I relied heavily on learning about my condition from the community of other patients with EDS/ HSD, and realised my story isn't unique at all. We are not "rare' - we are rarely diagnosed.
Once diagnosed it's nearly impossible to find a qualified physiotherapist, like with everything it is an Eircode lottery. We get no where on the treatment abroad scheme (especially in cases to see consultants) and as the main UK Hypermobility clinics are private this is automatically excludes us from the scheme. The HSE pretend we do not exist, quoting ridiculous numbers when asked how many of us there are in the country!
My story isn't special, or unique -it's a very similar story for most patients in Ireland with these conditions. This cannot continue. People are literally being left to rot. Parents are forced to fund their children's healthcare instead of their own, because they often cannot afford to do both (as these are genetic conditions). We cannot let another generation of EDS and HSD patients go undiagnosed and untreated. Please support our campaign - Sign up the petition and share on social media. Follow us on Facebook and Instagram.
♡ www.eds4ire.ie
♡ https://www.facebook.com/eds4ire
♡ https://www.instagram.com/eds4ire
♡ https://www.youtube.com/kittycolberteds4ire