New Zealand EDS Patients told “It’s all in Your Head”
BY: THOMAS HEATON AND DAVID MAIDA
The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose.
Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said he was currently treating about 40 patients with the syndrome.
Burling said one of the most common signs of Ehlers-Danlos was hyper mobility – great flexibility – and stretchy skin, and some patients may bleed easily.
If a patient’s joints were treated roughly, it could cause them to become dislocated or cause an extreme amount of pain.
“Some physiotheraphy can injure patients. I know of patients injured from physio therapy,” said Burling.
Like other Ehlers-Danlos patients, Floodsmith-Ryan said he had been injured before and is in constant pain but tries to go for the odd jog or walk.
“I’ve had to give it up basically,” he said. “It’s painful, I’m left quivering on the ground.”
Now, he’s lost a lot of muscle around his shoulder. He tries not to use it too often because of the pain. But his condition is also hard for his friends to understand, and he has to opt out when they play sport. He’s has no visual symptoms, or casts or bandages.
“They don’t get it in the slightest, they might take the piss sometimes.”
Floodsmith-Ryan said it also affected his work and he had to give up his landscaping job. Although, now he’s been able to start part-time at a local cafe — washing dishes.
His mother, Kerry Ryan, said they have struggled to find the right care, if any, for her son.
“If we were in America, or Australia we would have been under a team of specialists,” she said.
“We were told by the shoulder specialist there was nothing he could do. It’s not like cancer, when you go to see an oncologist.”
Although her son has a GP who understands this condition, there was simply no provision in New Zealand’s health system for caring for people with Ehlers-Danlos, said Ryan.
And, she said, when they try to bring the condition up with other doctors, she said their knowledge, or lack of, was concerning.
“I had to do my own research. I feel like I know more than they do.
“You get a diagnosis and then you’re on your own. I think in New Zealand, it shouldn’t be like that.”
Floodsmith-Ryan is not the only person in this country to live with the mystery illness that carries with it a world of constant pain.
Palmerston-North woman Tracey Jourdain was born with her feet pointing in the wrong direction. It was the first sign of many that has been overlooked.
She has suffered from Ehler-Danlos her entire life, having had surgery more than 20 times.
Her jaw joints have been replaced, her shoulder joints too. The pain is only bearable because it’s become an “everyday feeling”.
A qualified electrician, Jourdain said she thought the pain was normal.
“I thought all the pain that I was in was because I was a woman in the trade. I convinced myself it was all my fault.”
But that was never the case. She was suffering immense pain in her nerves, joints and just about everywhere else. Even her earlobes throb in pain.
Treatment should be easy, it should be cost-effective, and it could help up to 2000 people countrywide. But, because of her condition, ACC refuses to help when she and other Ehler-Danlos sufferers are injured.
After a car crash in 2014, Jourdain said she was refused help by ACC, and DHBs have been largely unhelpful.
She said part of the problem is if they go untreated, their conditions get worse and more complicated. Another problem was having people understand their conditions.
“The biggest thing is that family, friends don’t believe you. They don’t believe you and think of you being a psychological case. I can no longer garden, no longer clean the house as much as I could I can no longer cycle,” Jourdain said.
“It would save a lot of suffering and a lot of costs for the DHBs if they treated it.”
Gabrielle Scott, executive director at Allied Health said there were no “established care pathways or protocols in New Zealand DHBs” to treat Ehlers-Danlos, and it was primarily self-managed.
“In general patients would be cared for in the community under the care of their general practitioner,” she said.
“For patients referred to MidCentral DHB, we are focused on patient-centred care – that is ensuring that the care provided is specific to the individual and their needs.”
Scott said a GP would co-ordinate the patient’s care, and would seek specialist services as required.
“These services would typically include occupational therapy, physiotherapy, psychologist support and pain management.”
Treatment could include symptom management, muscle strengthening exercises and education to self-mange their condition.
“Muscle strengthening usually focuses initially on trunk core strengthening and progresses to include strengthening muscles around the other affected joints.”
But Burling, who is currently treating up to 40 patients with Ehlers-Danlos said New Zealand was lagging behind in implementing a protocol for patients.
“A lot is just not known about it. Part of it needs to be general education because EDS is much more common that we first thought,” said Burling.
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