A YOUNG woman with a loose joint syndrome which renders her unable to work or socialise with friends fears she will end up in a wheelchair after the HSE refused to allocate funding for vital physiotherapy treatment in the UK.
Sarah Murphy (23), 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 in London. The hospital recommended that Ms Murphy undergo a “comprehensive and intensive programme of physical rehabilitation coupled with pain management”.
She 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 the syndrome and is a centre of excellence for the condition. This specialised form of treatment is not available in Ireland.
However, Ms Murphy’s E112 application form was turned down. A letter from the HSE said it failed to reach the criteria necessary on the grounds that there are “adequate physiotherapy services available in Ireland”. Ms Murphy said she had 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. 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.”
She 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 National Health Service.
Ms Murphy fears that if she does not receive appropriate treatment her quality of life will continue to deteriorate.
A spokeswoman for the HSE said she was unable to comment on individual cases. 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 it is genetic. It is caused by a defect in a protein called collagen.