5,000 signatures reached
To: Taoiseach Micheál Martin and Minister for Health Stephen Donnelly
Appoint a qualified consultant for Ehlers-Danlos syndrome in Ireland
Currently there are no designated 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. People suffering with all forms of Ehlers-Danlos syndrome need qualified, consultants in this country -and should not have to pay out of their own pocket to travel to the UK.
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.
I was only diagnosed in my early 30's, after a life in pain -at times, extreme agony. 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. By the time of my diagnoses I had deteriorated so much that I found it very difficult to find even a physiotherapist or occupational therapist to keep me on as a patient. I am slowly clawing back parts of my life, but must pay out of my own pocket for treatment in the UK. We get no where on the treatment abroad scheme (especially in cases to see consultants) and as the main UK clinic is private this is automatically excluded 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. This cannot continue. People are literally being left to rot. We cannot let another generation of EDS and HSD patients go undiagnosed and untreated. Please support our campaign -Sign the petition and share on social media. Follow us on Facebook, Twitter and Instagram.