Advocate calls for hub and guidelines for Ehlers-Danlos patients
- Kelly Smith
- Dec 14, 2018
- 2 min read
Updated: Oct 14
New Zealanders with a condition more common than autism are regularly discriminated against by the country's health system, an advocate says.
And it's because of a lack of funding and awareness of Ehlers-Danlos syndrome, the Ehlers-Danlos Advocacy Organisation lead co-ordinator Tracey Jourdain said.
Ehlers-Danlos syndrome [EDS] is a hereditary, overlapping group of connective tissue disorders that leads to widespread and seemingly unrelated symptoms.
It can take years for sufferers to be correctly diagnosed because it is not widely understood and even with a diagnosis many are disbelieved and misdiagnosed with a mental illness, despite early intervention being key to avoiding injuries.
The Herald has this week highlighted four cases where women diagnosed with EDS were labelled with either factitious disorder or traces of personality disorders and say they were effectively left with minimal or no care for their life-threatening illnesses.
There is worldwide momentum to increase awareness of factitious disorder in patients to stop them causing harm to themselves by undergoing myriad tests, and to save time and money on wasted procedures.
Statistically there are about 1800 EDS sufferers in New Zealand, although it's thought that figure could be higher, ranging from minor hypermobility to major life-threatening conditions such as spontaneous bleeding and severe bowel dysfunction.
"Refusing to believe a disabled person is in pain, or is suffering dysfunction and/or accusing them of mental illness because their pain and dysfunction is caused by disability rather than disease is discriminatory," Jourdain said.
"Similarly, failing to provide treatments when we have greater clinical need and benefit because we are in the minority is also discrimination."
She wants national clinical guidelines and a specialised hypermobility hub to keep pace with other developed countries and said EDS patients are being unnecessarily injured because of the lack of knowledge.
"ACC tends to discriminate by saying EDS caused the injuries, which is not true, it only makes us more prone to injury and slower to heal."
Jourdain, who has EDS, said it was on the back of this destructive pathway, that she and husband, Nigel Jourdain, wrote to previous Heath Minister Dr Jonathan Coleman two years ago about EDS treatment protocols.
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