Sarah fears life in wheelchair after HSE denies funds
Sarah Murphy, 23, from Kinsale, Co Cork, suffers from a rare syndrome called Ehlers Danlos which is marked by extremely loose joints, hyper-elastic skin that bruises easily, and easily damaged blood vessels.
Sarah’s joints can pop out when she is performing simple everyday acts such as brushing her hair, and she is often confined to bed for days arising out of joint dislocation, hypermobility, and chronic joint and spinal pain.
Ms Murphy was diagnosed with Ehlers Danlos syndrome (EDS) earlier this year by world renowned specialist Dr Rodney Grahame at University College Hospital, London. The hospital recommended that Sarah undergo a “comprehensive and intensive programme of physical rehabilitation coupled with pain management”.
Sarah applied to the HSE for funding under the treatment abroad scheme for the recommended six-week treatment at the Royal National Treatment Hospital in Stanmore, Middlesex. The hospital offers a range of specialised treatments for patients with EDS and is a centre for excellence for the condition. This specialised formed of treatment is not available in Ireland.
However, Sarah’s E112 application form was turned down. A letter from the HSE said her application failed to reach the criteria necessary on the grounds that there are “adequate physiotherapy services available in Ireland”.
Sarah, who often walks with the aid of a crutch, said she has been left in “utter despair” since she received the letter from the HSE.
“They want to send me to a rehabilitation centre in Ireland but we don’t have the expertise here”, she said. “I dislocate everything. Sometimes I will just be sitting in the kitchen making tea and my shoulder will pop out. I can’t work. I am an employer’s worst nightmare. If I fell in the workplace it would be a disaster.”
Sarah said one of the most upsetting aspects of the illness is being unable to work or mix with friends.
“If I went to a pub somebody could just brush past me and I would be on the ground in agony. My right hip slips out everyday. I can’t even take pain killers for the pain because of allergies so I rely on injections. I am sick of being in bed and I end up watching TV. It upsets me to see [the character] Izzy in Coronation Street because she has my condition and she is in a wheelchair. I don’t want to end up like that.”
Sarah lives with her father Billy, who also has health issues. Accessing EDS treatment in the UK in a private capacity would cost in the region of €60,000. The treatment is free to UK residents under the NHS.
Sarah fears that if she does not receive the appropriate treatment her quality of life will continue to deteriorate.
“I don’t have a life. I sit here day after day. My friends are terrified of going anywhere with me in case I get injured,”| she said.
“I can’t even wear high heels. I can’t date. Lets face it, guys don’t want to go out with a girl who is falling apart. I am just getting worse and worse.”
A spokeswoman for the HSE said she was unable to comment on individual cases. However, she asked that Ms Murphy contact the HSE to discuss her concerns relating to the refusal of her application.
EDS is a connective tissue disorder, and is genetic. It is caused by a defect in a protein called collagen.
There are more than 30 types of collagen in the human body so EDS is very difficult to diagnose. That is one of the biggest challenges that face EDS sufferers.
Joints are hypermobile (lax) due to the extra elasticity of the ligaments resulting from the collagen abnormality.
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