Bay of Plenty mother Pam Coburn says she faces a “death sentence” – expecting to die within the next five years if she does not pay $180,000 to travel to Germany for surgery. Hamilton teenager Kai Hay cannot eat, drink or work and says she “desperately” needs the same surgery but is struggling to raise money. And Auckland teenager Freya Dibben says her life “looks very different now” after having the surgery last year.
The treatment they seek to address abdominal vascular compression syndromes (AVCS) is unavailable in New Zealand. The trio want this to change. Megan Wilson reports.
Pam Coburn has not eaten anything since March 2022. The last thing she ate was her son’s birthday cake when she ended up “on the floor in a ball in pain”. She likens the pain of swallowing food or liquid to “swallowing a gobstopper with knives that’s hot”.
Since 2022, Coburn has been feeding and drinking through a tube that goes into her nose and intestines – something she is prepared to do “for the rest of my life”. Coburn was diagnosed with Ehlers-Danlos Syndrome (EDS) in September and a comorbidity Abdominal Vascular Compression Syndromes (AVCS) in March. EDS is a group of connective tissue disorders that are generally inherited.
Common characteristics include joints that move more than normal, unusually stretchy skin and fragile tissue with wounds that take longer to heal. Vascular compression syndromes are a group of conditions occurring when blood vessels are u.
