Sliding around in the dark : What it s like to have a rare disorder in New Zealand
27 Feb, 2021 04:00 PM
9 minutes to read
Jaime and Aubrey Christmas, in November 2020. Photo / Supplied
Medical advice from Facebook, waiting years for a diagnosis, juggling dozens of specialists and even wishing it was cancer instead: these are the realities faced by the thousands of New Zealanders living with a rare disorder.
Some might be the only person in the country with their illness, but in total they amount to 300,000 Kiwis. It s comparable to the number with diabetes, but their pathway to care is much less certain.