Cork woman with chronic loose joint syndrome claims State abandons people like her

Sarah Murphy

By Olivia Kelleher

A young woman with a loose joint syndrome who cannot work or socialise because her joints pop out when she is doing simple acts like brushing her hair says individuals like her have been abandoned by the State.

Sarah Murphy (29) from Kinsale, Co Cork is a carer for her father, Dave, who has a brain injury following a stroke. She has looked after her father since she was 17 and was herself diagnosed with the rare disorder Ehlers Danlos Syndrome (EDS) when she was 23.

Sarah says there is so little expertise on EDS in Ireland that she became severely depressed in her early twenties as doctors thought her symptoms were in her head.

A chance meeting with a British doctor at South Doc surgery in Cork led to her diagnosis after he informed her that she was just like a patient he had treated in Birmingham.

Sarah suffers from chronic pain and is currently losing weight at a dramatic speed. EDS is primarily characterised by extremely loose joints, hyper elastic skin that bruises easily and easily damaged blood vessels. As it stands Sarah does not qualify for treatment abroad in the UK where she says experts are more knowledgeable about the condition.

She says her quality of life is poor and that she is being "left to rot" in Ireland. On a "good day" recently she managed to plait the hair of dolls for her young neighbour. She enjoyed the feeling of normalcy.

That might not seem like anything massive to anybody else but at that stage I had been in the bed for two and a half days with the pain in my stomach. For me it was a really nice moment. I was just showing a child how to plait a doll's hair and I wasn't running to the bathroom.

Sarah said she lives a "very different type of life" from most people her age.

"I don't have a typical life. I could never work full time. At the moment I can do very little. I am stuck in bed again today. I will probably never be able to have children. It makes dating very difficult. You can't meet someone on a first date and say 'You have to be careful. Every joint in my body goes out.' I do my best in life."

Sarah tries to "carve out happiness" with her artwork, gardening when she is able, reading and her dogs. She says she needs vital tests and treatment in the UK and is becoming ever more worried about her weight loss.

I am 55.9kg. In November I was 66kg. The weight is dropping all the time. I need intervention now. They don't know what is causing it here. I am hoping the expert in the UK will have a better idea of what could be wrong but I need to pay to go.

Ms Murphy says ultimately she just wants some degree of a regular life. She is unable to drink tea or coffee and her diet is seriously restricted. A night out with friends is a pipe dream and she cannot even go for a meal.

Ms Murphy says she tries to be as self-sufficient as possible but life is hard for herself and her beloved father.

"I am so used to doing everything myself. My dad broke his hip last year and he is doing well again. This (me not receiving care) is putting a strain on him too. Last year I was some bit well so he was able to come home from hospital to me. Now I could be in the bathroom for three to four hours at any given time. "

Sarah says she lives for the idea of better days.

"I want to have good times and memories rather than be stuck in my room. It is a beautiful day and I am stuck here like a zombie awake for the last twelve hours. If I could get the help from the State to fund this it would be a huge weight off everyone."

Sarah needs urgent help with her gastric issues and weight loss. With EDS stomach wall lining is fragile and bowel ruptures can occur. Constipation and other motility (movement) disorders feature, as does gastroparesis (paralysis of stomach; inability to process food).

Sarah adds she hates asking the public for money for treatment abroad but has been left with little choice but to set up a Go Fund Me page as both she and her dad are on disability benefit and cannot obtain bank or credit union loans.

In a statement the HSE said that they were unable to comment on individual cases. The statement said that the Treatment Abroad Scheme allows for an Irish based Consultant to refer a patient that is normally resident in Ireland for treatment in another EU member state or Switzerland, where the treatment in question meets certain criteria.

"It is not the function of the HSE to 'endorse' operations/treatments. It is the referring consultant that recommends the appropriate clinical approach/treatment for a patient and stipulates as part of the TAS application process that the operation/treatment is appropriate to the patient’s needs."

Only 130 people are currently living with a diagnosis of EDS. Individuals with the condition often report that there is a shortage of multi disciplinary teams to treat them and that the vast knowledge in the field is in the UK. The HSE has previously refuted suggestions that Ireland is without expertise in the area.

Sarah was diagnosed in 2012 by world-renowned specialist Dr Rodney Grahame at University College Hospital in London. The hospital recommended that Ms Murphy undergo a “comprehensive and intensive programme of physical rehabilitation coupled with pain management”.

She claims she has received little in the way of support from the State since her diagnosis.

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