After enduring more than two years of a gruelling odyssey of debilitating symptoms, Bay of Plenty resident Pam Coburn has been diagnosed with classical Ehlers-Danlos syndrome – cEDS, and the rare co-occurring condition Abdominal Vascular Compression Syndrome - AVCS.

Pam is deteriorating quickly, fighting for her life, and battling daily with debilitating abdominal and pelvic pain, fatigue, migraines, tinnitus and nausea.

As there is no treatment for EDS and AVCS is New Zealand, the only option she has available is to undergo urgent life-saving and expensive surgery in Europe. And time is running out, with around $180,000 needed to meet the cost of surgery.

EDS is a rare genetic connective tissue disorder, severely affecting Pam’s entire body. The AVCS conditions she also suffers from specifically includes Nutcracker Syndrome and May-Thurner Syndrome, and possible more.

The young mum and small business owner became severely unwell in August, 2021, previously enjoying an active adventurous life with husband Jon, and sons Benny, 8 years, and Ollie, 6 years.

Every day her family has watched as Pam’s quality of life has become critically reduced.

“She is malnourished and has been tube-fed via different methods since April 2022,” says Jon.

“She can barely make it out of bed these last few months. She is deteriorating quickly.”

Pam’s sister Renee Taylor has set up a Givealittle page to raise funds to meet the $180,000 goal.

“EDS and AVCS are extremely misunderstood in New Zealand and there is little to no treatment for it here,” says Renee.

“Health insurance is also of no use. Both of these conditions are not acknowledged in New Zealand's public health system, nor covered by private health insurance.

“Surgery overseas is now what needs to happen. Our mum Joy Veen will be accompanying her overseas for this.”

Pam is reaching out to the community via the ‘Pam’s Positively Full Life’ Facebook page asking businesses to donate a product, service, donation or voucher to create prize packs for a social media raffle.

Pam’s journey so far:

After two-and-a-half years and lots of self-advocating, Pam finally had a diagnosis this week.

“If it wasn't for my desperate search for answers, the amazing online community of chronic illness sufferers on social media and a small handful of amazing specialists here in New Zealand, I wouldn't be where I am today,” says Pam.

“I was told it was all in my head. To just keep eating as it will improve. That all the scans were clear and my obs were normal. I was told it was IBS. It was confused with my previous history of gastroparesis. That I just needed to get active again. That my body would eventually recover with perseverance.”

Pam Coburn with her husband Jon and sons Ollie, 6 years, and Benny, 8 years. Photo: Supplied.

Pam’s husband Jon recalls their gruelling time dealing with medical staff who were unable to help.

“When she first went to Tauranga Hospital she spent 11 days there and was told they couldn’t find anything,” says Jon.

“She was sent home to be seen as an outpatient at Gastroenterology, but they didn’t even see her in those 11 days she had stayed in hospital.”

Jon says Pam finally had an outpatient appointment a couple of months later.

”And then on Easter Tuesday in 2021 she had to go into Tauranga Hospital, and came home after three months.”

A primary school teacher, Jon used up around 40 sick days taking their young boys back and forth from their home in Athenree to see their mum in hospital.

“Pam gets constant infections down her tube which is how she gets fed. To get that fixed she has to go to the Emergency Department at Tauranga Hospital," says Jon.

“One day I dropped her off at ED at 9am and picked her up at 6pm after she’d had the five-minute procedure. That night there was an accident on State Highway 2 between Katikati and Athenree so we had to turn back to Tauranga, go over the Kaimai, through Te Aroha and Waihi, and finally ended up getting home at 11pm that night.”

Jon says they went to see a rheumatologist in Auckland.

“He diagnosed her and put in referrals to a private specialist in Hamilton otherwise we wouldn’t have got anywhere,” says Jon.

“After a few hospital admissions, many doctors’ visits and self-funding specialists’ appointments, in September 2023 I found out I have EDS (Ehlers-Danlos Syndrome),” says Pam.

“I have been deteriorating fast since January 1, 2024, with more symptoms and increased older symptoms added to what I was already experiencing. “

This meant she had long bouts of being bedridden, and very little energy on days that weren’t as bad.

“This led us having to stop home schooling and send the boys to school. I now spend the time they’re at school sleeping, resting or both.”

Last Monday, March 18, Pam received the specialist’s report.

She says she always knew there was more going on and kept pursuing answers.

“The key here is to listen to your body and don't stop speaking up. Don't stop asking questions. Don't stop your research. Don't take no for an answer.”

She says her quality of life has been greatly reduced.

“I'm in a huge amount of pain, all the time. I have chronic fatigue, nausea and can no longer manage anything orally. I have a pump for feeds and fluids through my NJ [nasojejunal tube].”

Pam Coburn resting against a pillow with her sister Renee Taylor. Photo: Supplied.

Pam Coburn is needing life-saving and expensive surgery in Europe. Photo: supplied.

Pam’s mum Joy Veen and youngest sister Renee Taylor are taking over the task of advocating for her now.

“They are in control of the fundraising and media attention. I have reached the peak of being able to do anything more than function. It seems, once I'd received my diagnosis, my body finally let go of the push, and 'gave in' to the symptoms.”

She has found herself sleeping more the past week than she has in a long time.

The diagnosis, so far:

“My scans have been reported on by a private specialist in New Zealand and they have found I have Nutcracker Syndrome and May Thurner Syndrome,” says Pam.

“I am going to get further opinions from specialists in Germany and Spain costing about $1000 combined. These both will include a detailed report and their recommendations because it is possible there is more going on.”

Nutcracker Syndrome is a compression of the left renal vein.

“I have a severe compression. And it's caused my body to re-route blood that would otherwise go to the kidneys into my ovaries and uterus.”

Consequently Pam’s left kidney is enlarged, and there is a risk of kidney damage leading to kidney failure if untreated.

May Thurner Syndrome is a compression of the let iliac vein. This causes a disruption in blood flow and could lead to deep vein thrombosis and a pulmonary embolism.

Both of these Nutcracker and May Thurner syndromes are life threatening.

“They are also a likely cause of my inability to eat,” says Pam.

She is hopeful that surgery could lead to her being able to eat and drink again, and for the feeding tube to be removed.

“Even though I'm on a feeding tube, and taking medications to help store fat, I am struggling to gain weight.”

In three months she has put on a kilo and a half.

“I'm sitting at a BMI of 16. I cannot risk losing any more weight, as surgery and the recovery from surgery becomes very difficult.”

Surgery needs to happen sooner rather than later.

The cost will be about $200k with airfares, post-operative care and further recovery, physiotherapy, and tests in NZ privately on return.

Renee says getting the funds together fast, is key.

“That means I can have surgery sooner, rather than later,” says Pam.

Having surgery sooner, means a better chance of recovery, with less chances of more going wrong.

“We need all the help we can get,” says Renee.

To help Renee raise funds for Pam’s surgery and to give her a second chance at life, please go to her Givealittle page.