'I spent my twenties on waiting lists' – EDS sufferers forced to travel to London at own expense for specialised treatment

People with a “rarely-diagnosed” genetic condition are forced to travel to London and fundraise to cover the treatment cost because there is no specialist in Ireland.

Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HDS) are complex connective tissue disorders which result in joints dislocating on a daily basis, leaving patients in extreme pain.

Currently, the HSE has no specialised consultant to deal with these conditions. Furthermore, campaigners are claiming that many medical professionals have no understanding of EDS.

The condition can affect up to one in 2,500 to one in 5,000 people, according to the latest research which was conducted in the late nineties. Recent clinical experience has suggested the syndrome is more common.

Speaking to Independent.ie, campaigner Kitty Colbert, aged in her thirties from Dundalk, said she would like to see the HSE appoint a specialised EDS consultant and support team.

“There are a few private consultants, but they are costly and not expertly trained,” Kitty, who has EDS, said.

“Ireland has rheumatologists, but in my experience they aren’t used to dealing with EDS. Some people have come across GPs who don’t believe in EDS at all.”

Growing up, Kitty said EDS began to affect her life gradually, and she struggled to get a diagnosis.

“I was always in pain, I was a clumsy child. As I got older, my pain increased,” she said, describing on how bad days she is still forced to use a wheelchair.

“I loved sports and running but gradually had to stop most activity because it hurt too much, and I found controlling my movements difficult.

“Mentally, it was draining because I didn’t know what was wrong with me and just thought I was a clumsy and stupid child.

“I spent my twenties on waiting lists,” she continued.

“Each doctor said there was something seriously wrong with me, but did not have the training to diagnose me… even though by this stage I was using a cane.

“Your life is put on hold, college is postponed, and working isn’t possible.”

Eventually Kitty had lost so much fitness and muscle tone, she ended up in Harold’s Cross Hospice, which offers services such as physiotherapy and hydrotherapy that could cater to her symptoms.

However, Professor Douglas Veale, Professor of Medicine and Consultant Rheumatologist at Harold’s Cross, said the unit can now no longer facilitate those with EDS.

“It assesses, educates and treats in-patients, day cases and outpatients with demand growing annually and increased case complexity.

“An application for funding for an EDS service was submitted in 2015, but was not approved,” Prof Veale said.

“Unfortunately, the unit does not have the resources or the specialised staff required to provide services for those with complex EDS, which may include cardiovascular and neurological symptoms, some of whom have required transfer to nearby acute hospital emergency departments as a result of these complications in the past.”

Kitty told Independent.ie she would “love to see” the HSE appoint a specialised EDS consultant and to supply them with a team of physiotherapists, occupational therapists, gastroenterologists and cardiovascular doctors.

A specialised team is needed because EDS can affect many of the body’s systems, including eyesight and hearing, she added.

Kitty said that due to the lack of consultants, many EDS patients travel to a Hypermobility Unit in London, but are forced to pay for the service out of their own pocket, either through saving or fundraising campaigns.

“We would also love to see a Hypermobility Unit in the new National Children’s hospital; this was suggested at the protest by Letitia. This is more unrealistic, but it would greatly improve the quality of life for children with EDS,” she continued.

“EDS is not rare, it’s rarely diagnosed.”

According to the HSE, there is not a need for a single specialist clinician in Ireland to treat EDS.

The HSE confirmed to Independent.ie that there is no one individual consultant, but said “all consultant rheumatologists are required to have trained in the diagnosis and management of EDS and they care for adults and children with EDS”.

“Consultant rheumatologists are supported by a multidisciplinary team and cross-refer to other relevant consultant specialists needed for the care of EDS sufferers, as is necessary.

“Rather we require an increase in consultant rheumatologists nationally which will ensure that the national population can access the service, seeing the right person at the right place at the right time,” they said in a statement.

When asked about the lack of resources at Harold’s Cross, the HSE commented that “inpatient care such as is provided by the Rheumatology Unit located in Harold’s Cross is not required for most patients with EDS.

“All hospitals providing Rheumatology services should be sufficiently staffed to cater for the needs of these patients, though the principal issue is access to services as Ireland continues to have one of the lowest numbers of rheumatologists relative to population in the EU.”

However, the HSE admits EDS patients are having trouble accessing treatment.

“Despite the implementation of novel service improvement initiatives, coupled with recent increase in nursing staff, there are still access issues for all patients in need of a consultant review.

“This is due to the current deficit in consultant numbers which has a significant impact on service availability, demonstrated by the all-time high waiting list.”

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