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.
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A large inscribed blue and white Red Cliff visit deep bowl
Late Ming-Early Qing (1640-1670)
The deep rounded sides painted to the exterior with a panel enclosing a scene with the poet Su Shi and two companions in a boat seated at a low table under a canopy enjoying wine, an oarsman standing at the helm, the scene enclosed by a larger continuous calligraphy panel with an excerpt from Su Shi s Ode to the Red Cliff, the interior painted with two encircled bands of lotus flower-heads and water fronds, one at the rim, the other at the well, all centered by a Chenghua four-character mark.
About PFIC
Progressive familial intrahepatic cholestasis (PFIC) is a rare disorder that causes progressive, life-threatening liver disease. Patients have impaired bile flow, or cholestasis, caused by genetic mutations. The resulting bile build-up in liver cells causes liver disease and symptoms. The most prominent and problematic ongoing manifestation of the disease is pruritus, or intense itching, which often results in a severely diminished quality of life. Other symptoms include jaundice, poor weight gain and slowed growth. In many cases, PFIC leads to cirrhosis and liver failure within the first 10 years of life, and nearly all people with PFIC require treatment before age 30. There are no drugs currently approved for PFIC, only surgical options that include partial external biliary diversion (PEBD) and liver transplantation. Additional information on PFIC is available at https://www.pficvoices.com.
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