Health NZ reviewing how Ehlers-Danlos Syndrome is diagnosed and treated

Health NZ is reviewing how a rare connective tissue disorder is diagnosed and treated because “the current evidence is of low quality”. It comes as a succession of Kiwis with Ehlers-Danlos Syndrome (EDS) , several of whom are young women, have resorted to fundraising more than $100,000 each for surgery that’s unavailable in New Zealand in the hope they can eat and drink normally again. Some patients have also raised concerns about their struggle to be diagnosed with EDS, including being accused of faking their illness, being wrongly diagnosed with eating disorders, or told they have traces of personality disorders .

One of those booked for surgery in Germany is Wellington teenager Julia Choquette . Once a fun-loving student involved in competitive cheerleading, she hasn’t eaten solid food for more than a year. Health NZ has emphasised that EDS is an extremely rare group of conditions and no single treatment, including surgery, is always successful in removing the underlying problem.

.