Rachel Weatherly, 23, a former Tauranga Moana Football Club player from Whakatāne, is fundraising so that she can have surgery. Photo / Brydie Thompson
Just three years ago, Whakatāne’s Rachel Weatherly was thriving on a football scholarship in the United States.
Today, at 23, she’s battling a complex and debilitating medical condition that has robbed her of her sporting dreams and forced her to become her own advocate through a complicated diagnostic process.
She has been diagnosed with Abdominal Vascular Compression Syndrome (AVCS), a disorder where pressure on blood vessels makes it difficult to eat enough to sustain her weight, and rare connective tissue disorder, Ehlers-Danlos Syndrome (EDS).
She cut her time in the US short to come home and get well, not knowing this could mean the beginning of the end of her football career.
“I started vomiting all the time. I went to the doctors after a couple of weeks and they said it was a stomach infection, so we treated that with a few rounds of antibiotics.”
But that didn’t help. Instead, it got much worse.
A gastroenterologist told her she had gastritis following an endoscopy.
“He loaded me up with nausea meds, antacids and everything and then I went back to America.”
She struggled through her second year playing in the US.
Back in New Zealand, a colonoscopy revealed inflammation in her large intestine, which led to a Crohn’s disease diagnosis.
She started treatment for Crohn’s, including weekly injections, but did not see improvements.
She said when she had to switch from private healthcare to public for financial reasons, everything “fell apart”.
The specialist ruled out Crohn’s and concluded she had an eating disorder.
She said she felt let down.
“They wouldn’t do anything. They basically said it was eating disorders. I was going downhill real fast, losing weight a lot faster. I wasn’t really keeping anything down.”
Weatherly said she spent many appointments describing her symptoms, including constant pain, nausea, exhaustion and inability to eat without excruciating pain.
Her own research led her to believe she was experiencing abdominal vascular compressions.
“I found a bunch of stories within NZ, predominantly young women, and they basically had the exact same story as me. They helped guide me through the diagnostic process,” said Weatherly.
Late last year she visited a private specialist who raised suspicion of EDS while consulting about the possibility of AVCS.
He ordered a CT scan and a Doppler ultrasound and diagnosed one compression before suggesting she get the scan reviewed by experts overseas who specialise and treat AVCS.
A surgeon in Germany reviewed her imaging and diagnosed her with three compressions.
He recommended surgery in Germany. There were also options to have it in Spain and Australia. Weatherly said the estimated cost was $60,000 to $150,000.
She hoped to fly to Australia next month to meet with a surgeon who had also reviewed her imaging. If he couldn’t help, she planned to go to Germany.
Treatment in the meantime included using a nasogastric feeding tube.
The surgery is controversial and has been described as “experimental”, with some New Zealand vascular surgeons raising concerns about the lack of medical literature to support it.
Health New Zealand Te Whatu Ora national chief medical officer Dame Helen Stokes-Lampard said a very careful assessment of how AVCS was diagnosed and treated in New Zealand was required.
Stokes-Lampard said there was little data available to back a diagnosis, as it was a relatively rare disease.
“Health New Zealand has established a national vascular multidisciplinary meeting which is available to review patients who may have one of these vascular complications.”
This aimed to ensure patients received the most appropriate care.
“This meeting will determine whether a case requires surgery and, if it does, whether this is best managed without surgery or recommend surgery that could be done via the High-Cost Treatment Pool [funding for treatment overseas] or locally, depending on the individual’s circumstance,” Stokes-Lampard said.
“For these types of conditions, we find that many patients respond well to treatment without the need for further interventions.
“Surgical treatment is not always considered the best option for an individual, particularly because the level of complexity and uncertainty varies from case to case.”
Stokes-Lampard said in these instances, an individual might still wish to receive treatment overseas but would need to fund it themselves.
Weatherly has found support from other Kiwis with EDS and AVCS, including meeting Tauranga mum-of-two, Pamela Coburn.
Coburn had her last-resort surgery for AVCS in Germany a year ago.
Coburn said within four months after the surgery, she had no symptoms or pain related to AVCS.
She would do it again tomorrow if needed, even though the costs were substantial.
“I have my life back,” she said.
Weatherly’s father, Peter Weatherly, said his daughter was a fighter.
“She does not give up on anything.”
“Even last year when Rachel was unwell, still on all the meds she decided she was going to do a pre-apprenticeship to be an electrician.”
While juggling relentless symptoms and countless medical appointments, she managed to earn the second-highest grade in her class.
With the support of her local football club, community and a Givealittle fundraiser under way, Weatherly is fighting not just for her own health, but for awareness and change in the health system.
“No one should have to go through what me and many others have been through,” she said.
“If we can make the road a little easier for the next person, that’s the goal.”