Amiee Campaigns for EDS Treatment in Ireland

Amiee is raising EDS awareness in Ireland.  She is using her facebook page and video diaries to campaign for treatment to become available in Ireland or to be facilitated by the HSE abroad. There is no EDS specialist treatment available in Ireland. Amiee traveled to the UK at her own expense to receive her Ehlers-Danlos Syndrome diagnosis

Interview: Chris Dunne

Written by: John Dolan Evening Echo

Aimee-FoleyAIMEE Foley is 26 years old and has a lot going for her. Her mother, Deirdre, is devoted to her, as is her fiancé, Stephen Fegan. Aimee is secure in the knowledge that her loved ones will always be there for her, no matter what. That is a great source of comfort as she was recently diagnosed with a progressive disease called Ehlers-Danlos Syndrome (EDS).“After a long and weary road trying to find out what exactly was wrong with me, I was finally diagnosed with EDS last October,” says Aimee, from Midleton. The illness relates to inherited connective tissue disorders and can affect various parts of her life and diet. The biggest problem she suffers with is gastroparesis, a first cousin to gastroenteritis. EDS is so rare that there is no specialist treatment available for her in Ireland. “I am now campaigning for treatment to become available here in Ireland or to be facilitated by the HSE abroad for people like me, via my facebook page and video diaries,” says Aimee. “The diagnosis is the beginning of the journey and not the end. ”Let’s go back to the beginning .“I was always into sports and gymnastics as a youngster,” she says. “I played camogie and football in National School, which I loved.“But like many kids, I hated the dentist, and this was because my mouth couldn’t be numbed by a local anaesthetic, which was unusual. I’d always come out upset and crying. “My mother didn’t think there was anything sinister amiss, but then everything started caving in, including my digestive system. I started getting seizures at regular intervals and I was treated for epilepsy. “I kept having re-occurrences of these problems, I would recover and then start all over again.”Despite her health problems, Aimee moved to Greece after her Leaving Cert to teach English and  looked forward to a career in the airlines. “Unfortunately, I had to put my plans on hold as I travelled relentlessly from consultant to consultant in the hope of getting a diagnosis and then, to be able to get on with my life.”While Aimee desperately wanted to travel, and also get on the road to a promising career, the issued caused by her undiagnosed condition continued to hamper her.“I had been treated for pancreatic disease, for gastroenteritis and rheumatoid problems, all to no avail,” she says. “I had gone through painful surgeries without a local anaesthetic being effective due to my illness, and unnecessary medication that had horrible side-effects.  ”Eventually, a Rheumologist called Dr Kerrins, who is now retired, made the long- awaited diagnosis of EDS. The key  diagnosis was the fact that Aimee had hyper-mobility and the doctor was researching that area of joint function. EDS is so rare that very little knowledge or research into the disease has taken place. Five years of uncertainty had ended, but had been replaced with a new kind of uncertainty. “With the diagnoses came relief,” says Aimee, “but also a sense of being overwhelmed with the implications that the disease was progressive, that there was no treatment for it in Ireland, that Stephen and I and I would have to think long and hard about planning a family in the future, and that my life would always contain a question mark about my capabilities. ”While Aimee is pragmatic about her EDS, she is concerned and sad that here in Ireland, there is no specialist, or no centre for her disease. “I have already travelled to London for a legal diagnosis,” she says. “I am due back there in July for a consultation. Both trips have been funded by ourselves. “The journey proves very tiring and stressful for me and I feel very strongly that a service should be put in place in Ireland for people with rare diseases. even if it is a Portakabin, it doesn’t matter. “I have written to various TDs, to An Taoiseach and to the HSE. I have received a few replies, but nothing concrete. But I believe in standing up for myself.”

Ehlers-Danlos  Syndrome is a disorder that exists in all countries.  Treatment needs to be available to EDSers world wide!

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