Rachel Palmer talks about her struggles with Ehlers-Danlos Syndrome.
A Hastings family who drained their bank accounts to fight the cancer that would kill their father now face more heartbreak as his daughter, who has a rare disease, fights for a future.
Three people have died in New Zealand as a result of deadly complications from Ehlers-Danlos Syndrome (EDS) over the past few months, with some told by doctors beforehand they had been faking their symptoms.
Young Hawke’s Bay woman Caitlin Umbers, 22, and her family say they are doing everything they can to make sure she isn’t just another statistic.
The condition manifests as a series of rare connective tissue disorders that occur in roughly one in 5000 people.
Caitlin Umbers (left) and mum Leanne are trying to raise $180,000 for life-saving surgery. It's a plight faced by many suffering from Ehlers-Danlos Syndrome. Photo / Paul Taylor
Life-saving treatment in Germany to treat deadly vascular compressions costs somewhere in the range of $180,000, a sum the family simply cannot afford without help after spending years caring for Caitlin’s father Brian, who passed away from cancer in May last year.
“Financially ... savings and help from the family paid for his unfunded cancer treatment, and [that left] us in a position where there is nothing left for Caitlin,” Caitlin’s mother Leanne Umbers said.
“I manage all of her appointments, which are private, but it doesn’t leave us with enough to get to Germany.”
An application was in progress with what was formerly known as the Hawke’s Bay DHB (now part of Te Whatu Ora - Health New Zealand) for its high-cost treatment pool programme, but whether that is approved or not remains to be seen, and time is of the essence.
“It seems to be very difficult to get access to that,” Leanne said.
It’s been a harrowing journey for Caitlin, who grew up with a passion for dance, something she can no longer do as a result of the debilitating illness.
“From a young age, there were always stomach pains. As it progressed into adolescence, all the complications started to arise,” Leanne said.
“Mostly, it was this unexplained pain.”
Four years ago, specialist Dr Fraser Burling in Auckland diagnosed Caitlin with classical EDS, a starting point Caitlin said was “very helpful”.
“It was only this year that we had the vascular compressions diagnosed, which explains everything, really,” Leanne said.
Vascular compressions, a common companion to EDS, are a group of conditions that occur when a person’s blood vessels are under abnormal pressure, limiting the size of blood vessels and the amount of blood that flows through them.
“Worryingly, these are life-threatening, and there’s pressure now to get [Caitlin] to Germany, which is the leading place in the world to get them fixed,” Leanne said.
“EDS is degenerative, so there’s not a lot that can be done, but this complication is something that can be helped. It won’t take away the other issues, but it will save your life.”
Despite the struggle, the Hawke’s Bay community has rallied to support the family, with a variety of events and fundraisers in the works.
“We’ve got wonderful friends doing a bake sale, and there’s a fundraising concert being held at Iona College on December 18 to raise money. I teach ballet, and many past students are coming back to dance.
“My brother, a couple of weekends ago, rode the Lake Taupō Cycling Challenge to raise awareness. It’s very humbling to have that kind of help.”
For Caitlin, surgery would likely mean a slim chance at a better life.
“Having [the compressions] sorted would definitely help - even just being able to get out of the house, because most of the time I’m stuck in bed.”
“When you have the potential to vomit up your meal, it prevents you from going out. It’s very socially isolating,” Leanne said.
She said she was aware of about five other EDS sufferers in Hawke’s Bay, and they all kept in contact through messages.
Young Hawke’s Bay women Jaimee Gregory and Aimee Dear both underwent surgery for vascular compression in Germany earlier this year, with apparent success.
Dr Mike Shepherd, interim lead of hospital and specialist services at Te Toka Tumai Auckland, said Te Whatu Ora recognised accessing all the multi-disciplinary components of care in our current health system can sometimes “be a challenge” for patients with EDS.
Shepherd said hospitals seek to deliver evidence-based assessment and treatment aligned with the best evidence available.
”We recognise people’s rights to access alternative treatments. If patients are concerned about their access to care, we would encourage them to liaise with their primary care team or make further contact with the specialist team they have accessed previously.”
Ehlers-Danlos Sydnromes NZ CEO Kelly McQuinlan said more urgency was needed when it came to funding and education around the condition.
“New Zealand may be a small country, but we could be world-leading in healthcare if we let ourselves - but unfortunately, that responsibility falls on our Government and the funding provided.”
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.
