Aimee Foley, 26, from Midleton, Co Cork, who has Ehlers-Danlos syndrome (EDS) — an incurable connective tissue disease that effects the joints, muscles, bones, blood vessels, and organs — has launched a Facebook campaign and a YouTube campaign to highlight her plight. About 7,700 people have shared her video on Facebook.

Aimee was turned down for funding under the HSE’s Treatment Abroad Scheme (TAS) on the basis that she was seeking a specialist opinion rather than actual treatment, which TAS officials said was beyond their remit.

This was despite the fact that her doctors advised her to travel to the UK for a formal diagnosis because of the lack of expertise here in diagnosing such a rare disease.

The specialist who assessed her at the Hospital of St John and Elizabeth in London in May this year said given that Aimee does not have health insurance “it will be essential for her treatment to be funded by the State”.

Prof Rodney Grahame, a consultant rheumatologist, also said Aimee should be sent to the UK for a rehabilitation programme if a programme “for specific EDS patients” was not available locally.

Aimee has been in contact with the National Rehabilitation Centre (NRC) in Dublin and says they do not have such a programme.

However, Aimee would still have to be formally assessed by the NRC to confirm this before she could get any funding to travel abroad. She believes it could take a year or two to even get as far as the NRC stage.

“To even get a referral to the NRC would take until April 2014 because that’s the next appointment I can get with my consultant rheumatologist. Then I would have to join the NRC waiting list only to be told at the end that they can’t treat me,” she said.

Aimee said she would then face delays waiting for a referral to the NHS Rehab Centre in Stanmore, where the standard waiting time for pre-assessment is 22 weeks, and a further four to five months waiting for a bed should she be deemed eligible for the programme.

As her disease is progressive and her quality of life is deteriorating, Aimee is appealing to TAS to fund her treatment at the Hospital of St John and Elizabeth where they have a hypermobility unit for people with conditions such as EDS. This was her quickest route to vital treatment, she said.

Aimee said she is “at high risk of many complications” and is afraid the worst may happen before she can access treatment.

“I am in the early stages of paralyses of my bowel, stomach and most recently, oesophagus. There is no cure, and the worst I could face is total gastrointestinal failure,” she said.

Aimee has appealed to Taoiseach Enda Kenny, Health Minister James Reilly, and the HSE to fund her treatment abroad.

http://exa.mn/aimee