Tracey Jourdain: Ehlers-Danlos Syndrome

People with rare health conditions are being denied basic rights because of an unsympathetic funding regime.

“We pay our taxes too,” says Tracey Jourdain, the lead co-ordinator for the Ehlers Danlos Advocacy Organisation, “but with our small numbers we are denied the same level of care everyone else gets.”

As one of about 1800 New Zealanders with Ehlers-Dalos Syndrome, Jourdain is liable to partial and full joint dislocations, and secondary arthritis.

Not only is there little funding for the specialised physical therapy she requires, some DHB’s (including MidCentral Health) will not pay for the provision of the literature that would allow staff to train themselves in such matters. Both issues would appear to be in contravention of the New Zealand Disability Strategy.

As a result, Jourdain sustained a partial dislocation of her sacral joint and two ribs because medical staff did not know how she should be handled.

“This is terrible for me as a patient, but also stressful for the staff who are trying to help rather than harm. How did New Zealand get to the point where this sort of thing happens simply because hospitals won’t pay for simple safety information?”

She says it’s a problem common among all ailment-related group numbering in the low thousands.

“Without appropriate care, patients are suffering injuries that don’t heal and they end up with lingering, high-level pain. Many people end up unable to care for themselves and can only move with the aid of a cane or wheelchair from a young age and I’ve had to have two joints replaced, costing tens of thousands of dollars to the taxpayer. It is all preventable.”

By | 2017-06-16T20:34:00+00:00 March 13th, 2017|What's new, Your stories|0 Comments

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