Jaimee Gregory’s 18th birthday was one celebrated with friends. It’s a right of passage, but three months ago it was a pipe dream.
Gregory has a rare condition called Ehlers-Danlos Syndrome (EDS) and in June made a last-ditch bid for a normal life, travelling to Germany with mother Jo Gregory for treatment not available to them in New Zealand.
She’s now back and is ready to regain a semblance of the life of a typical Kiwi teen.
“We’re going out shopping. I haven’t had a birthday thing in years,” Jaimee said.
Advocates have described EDS as a misnomer within the New Zealand medical system. They claim discrimination in treatment because of a lack of awareness and understanding of it among hospital-based medical professionals making headlines over the past five years.
The condition manifests as a series of rare connective tissue disorders that occur in roughly 1 in 5000 people.
It often comes with a range of co-morbidities and debilitating symptoms that make eating, drinking, walking and even staying awake a challenge.
Over the years, vomiting, tachycardic episodes and severe pain all became constant for Jaimee.
Abdominal vascular compressions and Dieulafoy lesions were also eventually discovered, leading to further complications and a need for specialist surgery.
Dr Richard Sullivan, interim chief clinical officer at Te Whatu Ora, said if patients were concerned about their access to care, they need to liaise with their primary care team or make further contact with the specialist team they have accessed previously.
“We recognise that sometimes accessing all the multidisciplinary components of care in our current health system can be a challenge for patients,” he said.
Jo said treatment in Germany was a realisation of what proper hospital care should look like for Jaimee after she felt her daughter was being ignored and treated incorrectly through the system at home.
“My views are yes, it’s the [NZ] health system that’s a problem, but it’s also some of the professionals in the health system.”
One small victory is that Jaimee can now hydrate properly, something she previously could not do, but she still has a long road ahead.
Jo said the trip was never going to be the ‘magic cure’, but said patients understood this when travelling and that going over prompted further conversations about seeking external care as an option.
“If a healthy person has surgery like this it’s going to take months to recover, but we’ve got people going over that have underlying syndromes, so it is going to exacerbate everything else.”
She said a major issue was the confusion of symptoms in New Zealand, with referrals to the wrong specialists as well as specialists not understanding the condition and medical complications well enough.
The pair have put their support behind getting NZ health professionals trained in EDS-related surgery and management.
She said she was delighted some Kiwi doctors were even over there observing Jaimee at the time of her surgery.
“We’ve got a couple of mums that are really advocating and trying to get doctors on board,” Jo said.
One of those mums is Hamilton’s Rachel McKenna, who has been in close contact with Jaimee and Jo after her daughter Jemima faced similar challenges with EDS.
After pleading with one doctor to talk to the experts in Germany who were giving second opinions, she said the doctor made his way over to observe patients and meet with EDS experts.
“I continued to badger him. He was really open-minded about talking to them.
“All it takes is one open-minded doctor. There has to be more out there,” she told Hawke’s Bay Today.
Sullivan said Te Whatu Ora was not aware at a national level of any doctors who have gone to Germany to learn more about treating EDS, however many doctors throughout the health system had permission to travel overseas as part of their training.
“All doctors travel overseas as part of continuing medical education throughout their career to strengthen their personal learning,” he said.
Like Jaimee, the fight for many other EDS sufferers in New Zealand continues. In some cases, hope has tragically come too late.
Stephanie Aston, 33, died at her Auckland home on September 1. Aston fought a public fight against EDS after being told she was faking her symptoms by doctors.
“If we don’t do something about it then that’s how we are going to end up. It’s not fighting the system; it’s fighting for our lives,” Jaimee said.
Mitchell Hageman joined Hawke’s Bay Today in late January. From his Napier base, he writes regularly on social issues, arts and culture, and the community.