Pam fights debilitating condition
Needs life-saving and expensive surgery overseas
After enduring more than two years of a gruelling odyssey of debilitating symptoms, Athenree resident Pam Coburn has been diagnosed with classical Ehlers-Danlos syndrome — cEDS, and the rare cooccurring 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 possibly 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, and Ollie, 6.
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’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