by Nora McNairney | May 13, 2020 | Blog
Karin writes about life with her daughter in South Africa in a post originally shared on the Prader-Willi Syndrome Support – South Africa facebook page and reproduced here with permission. People with Prader-Willi syndrome (PWS) have some quite unusual traits...
by Nora McNairney | Apr 8, 2020 | Blog
An understandable concern for people with PWS, their families and other carers at this time is, first, whether having PWS makes you more susceptible to catching COVID-19 and, secondly, whether people with PWS are more likely to be seriously affected if they are...
by Nora McNairney | Mar 22, 2020 | Blog
This is a very strange and difficult time for all of us wherever we live in the world. For some the coronavirus epidemic may appear to have passed, for others it is at the early stages. Countries are learning from each other and research is informing the actions that...
by Nora McNairney | Mar 21, 2020 | Blog
Just over a week ago I started hearing that the schools in Ireland might be closed because of the Coronavirus. I was still very surprised when my teacher told me that my school would be closing that day for the following two weeks. Since then I have been doing some...
by Nora McNairney | Mar 10, 2020 | Blog
Chapter 1 Our story is simple and yet rare. I will be the storyteller (Georgian), not because I would know more (by no means), nor because I would tell better (nor that), but because I want to take on this burden at least. We were two people, a couple, who lived a...
by Nora McNairney | Mar 4, 2020 | Blog
Jane Cox from the Prader-Willi Syndrome Association of Ireland sends an update on plans for our next international conference. The members of PWSAI (Prader-Willi Syndrome Association of Ireland) are beavering away, along with our partners in IPWSO, getting ready for...
by Nora McNairney | Jan 28, 2020 | Blog
Charlotte Höybye Department of Endocrinology Karolinska University Hospital Stockholm, Sweden charlotte.hoybye@sll.se Growth Hormone (GH) treatment has been used for treatment of children with PWS for the past 30 years. In contrast, GH treatment has only recently been...
by Nora McNairney | Dec 11, 2019 | Blog
Contributed by Dr Janice Forster PWS is known for hyperphagia and temper outbursts. Researchers have discovered that temper tantrums precede the typical food related behaviors in early childhood. For all children, including those who have PWS, ...
by Nora McNairney | Dec 11, 2019 | Blog
contributed by Georgina Loughnan Georgina Loughnan (IPWSO Board member) Constanze Laemmer (paediatrician and nutritionist), Norbert Hodebeck-Stuntebeck (from the Professional Provider Caregiver Board) visited Hanoi, Vietnam, to present a one-day Prader-Willi Syndrome...
by Nora McNairney | Dec 11, 2019 | Blog
As 2019 comes to a close, our dear friend, Linda Thornton, will take a few steps away from IPWSO. Linda is known to many people within the world of PWS, but most people may not know the extent of her passionate and tireless commitment to IPWSO. Linda established the...
