MARCH 2022 - The prevalence rate of scoliosis in PWS has not been well established with figures ranging between 40% to 80% of patients in various studies and surveys. It is known that scoliosis typically increases with age, with occurrence…
We are aware that some children with scoliosis are not being diagnosed until their curve is quite severe. This is concerning because an earlier diagnosis can lead to treatments that reduce the curve or halt progression. Scoliosis can remain well…
On International Rare Disease Day, PWSA(NZ) stands with Rare Disorders NZ calling for action from Government to commit to a National Health Strategy for Rare Disorders. Today, Rare Disorders NZ released their Voice of Rare Disorders survey 2021, the largest-ever…
Whilst attending the IPWSO conference in Cuba, Julia and Dane Fuller, from New Zealand, were very fortunate to be able to interview expert endocrinologist, Dr Jennifer Miller. The interview contains useful information for families as Dr Miller discusses growth hormone…
NOV 2019 - With better management, people with PWS are living longer today, but the number of people known to our Association aged over 50 years is still relatively small. There is hope that this will change in the future…
There is evidence that for people with PWS it is beneficial to continue treatment with growth hormone therapy even after they have reached their final height. To learn more about growth hormone treatment for teens and adults with PWS, visit our GH…
SEPT 2018 - A Japanese research team, Koizumi et al, used dual-energy X-ray absorptiometry (DEXA scans) and abdominal computed tomography (CT scans) to compare the fat distribution between before ceasing GH treatment and 6 months and 12 months after the…