A Western Bay of Plenty woman fighting for her life against multiple health conditions has found her only treatment option is to undergo urgent life-saving and expensive surgery in Europe.
Pam Coburn, age 40, of Athenree has endured a lifetime of illness and injuries, followed by two-and-a-half years of progressively worsening debilitating symptoms.
These are all now explained given her recent diagnosis of classical Ehlers-Danlos syndrome – cEDS.
She also has the rare co-occurring condition Abdominal Vascular Compression Syndrome, or AVCS.
In a lot of constant pain, she can no longer eat or drink, and has a pump for feeds and fluids through a nasojejunal tube.
“I’ve been deteriorating fast since January [2024],” says Pam.
EDS is a rare genetic connective tissue disorder, severely affecting Pam’s entire body.
Only a tiny percentage of EDS sufferers also get AVCS.
Daily battles
She battles daily with debilitating abdominal and pelvic pain, fatigue, migraines, tinnitus and nausea.
As there is no treatment for EDS and AVCS in New Zealand, the only option for Pam is urgent life-saving surgery in Europe at a cost of about $180,000.
When Pam was born, she had gastrointestinal issues, and at age nine, underwent surgery for an umbilical hernia.
At 18, she developed a GERD type disorder and kidney issues and at 25, passed three large kidney stones while travelling overseas.
At 30, she developed gastroparesis with both stomach values becoming paralysed and requiring surgery.
Her latest symptoms came on at age 38 and are getting worse.
“The doctors thought it was because of my previous gastroparesis diagnosis, which clouded their search for answers and diagnosis,” says Pam.
The mother and small business owner became severely unwell in August 2021, previously enjoying an active adventurous life with husband Jon and sons Benny, eight, and Ollie, aged six.
Every day her family watches as Pam’s quality of life becomes 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.”
Extremely misunderstood
Pam’s sister Renee Taylor has set up a Givealittle page to raise funds.
“EDS and AVCS are extremely misunderstood in NZ 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 NZ’s public health system, nor covered by private health insurance.
"Surgery overseas is now what needs to happen,” says Renee.
Pam’s hopeful surgery could lead to her being able to eat and drink again, and for her feeding tube to be removed.
“Even though I’m on a feeding tube, and taking medications to help store fat, I’m struggling to gain weight.”
As such surgery needs to happen sooner rather than later.
The cost will be about $200,000 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.
“Our mum Joy Veen will be accompanying her overseas for this.
"We need all the help we can get,” says Renee.
To help Renee raise funds for Pam’s surgery, visit: https://givealittle.co.nz/cause/pam-urgently-needs-life-saving-surgery-overseas
Pam is also asking the community via the ‘Pam’s Positively Full Life’ Facebook page to donate a product, service, donation or voucher to create prize packs for a social media raffle.