EDS Awareness & Care Lacking in Ireland

Ireland is lacking specialists who know how to diagnose and treat EDS. This story follows an Irish woman who wished to receive medical care in nearby England,  but was denied coverage.

 

Wednesday, 15 May 2013

By Yvonne Evans for the Cork Independent Paper

Last year, the Cork Independent featured the story of Kinsale native Sarah Louise Murphy about her condition known as Ehlers Danlos Syndrome (EDS). May is EDS Awareness Month, and Yvonne Evans caught up with Sarah to see how her illness is progressing.

Last year when Sarah spoke out about her condition and the lack of treatment here in Ireland she had been refused funding from the HSE to travel abroad and be treated by the NHS.

Since going to the media with her story, the young woman has been offered physical therapy in a clinic in Harold’s Cross in Dublin.
“It was the right type of physiotherapy. It helped me but now after only five weeks of therapy I’ve been told to go home and self manage my illness. But, while the physiotherapy works now, it might not help in the future. The Government want people with chronic illnesses to be treated locally. There is no one locally here to help me. The last physiotherapist I went to in Cork didn’t have a clue what EDS was,” Sarah says.
Sarah has expressed before how she would eventually like to have a family, but now, the odds are slim unless she receives specialized help.
“If I decided I wanted to start a family in the morning I couldn’t because there is no specialist to help me. I need to be monitored during pregnancy otherwise me or the baby could die,” the 24 year old explained.
Sarah was quite vocal about being let down by the HSE and since then many other people have come forward who suffer from Ehlers Danlos Syndrome. Despite the rise in EDS it seems that doctors still know very little about the disease.   “I have been to CUH twice in the past year. Once when I couldn’t get my shoulder back in place and when I had a problem with my knee. As I was waiting to be seen the triage nurse came out and asked me to explain what Ehlers Danlos Syndrome was because the doctor didn’t know what it was. I knew I wasn’t going to be helped,” recalls Sarah.
Over Christmas two years ago, Sarah admitted herself into the GF ward in CUH because she was anxious and suicidal. This was a result of doctors telling Sarah time and time again that the constant pain was all in her head. Even now with a diagnosis in hand, Sarah sometimes comes across medical practitioners who are skeptical of her symptoms.
“At one point a doctor suggested that I had borderline personality disorder. I went to a psychologist in CUH and I was told this wasn’t the case, I was just anxious because of being in constant pain,” says Sarah.
Sarah is now managing her illness as best she can, but she is still calling out for the HSE and the Government to help her and others like her.
“I am doing the job of four specialists managing my illness alone. I have had to teach my Dad to put my shoulder back in for me when it dislocates. The Government are turning a blind eye to this. It is a constant battle for me. I don’t want pity, I want understanding and awareness. May is officially EDS awareness month in many cities throughout the world. I would love to see May be EDS month here in Cork. We just want to be recognized and not tossed aside,” Sarah concludes.”

Many with EDS are having a difficult time getting support from their insurance and government agencies. Another good reason to ramp up the EDS Awareness activities at all levels.

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