Kristina’s story

Hey! My name is Kristina and I’m a student reading for my master’s in health psychology here at the University of Galway. I come all the way from Malta where I obtained my undergraduate in psychology from the University of Malta.

Studying abroad has always been a dream of mine and I am extremely grateful to have the opportunity to live and study in this beautiful country along with such wonderful people. So far, the experience has been so fruitful and rewarding and I consider myself extremely lucky to be here.

My interest in PWS research stemmed from having worked with families affected by illness and bereavement in Malta. While working with those families I was witness to the challenges involved in caring for an ill family member, and soon after I developed an interest in caregiver wellbeing.

Upon meeting Professor Brian Hughes, I was introduced to the body of PWS research and together we identified the need for further research, especially with regard to caregiver burden and sibling experiences. By conducting this research alongside Professor Hughes, I am excited to learn more about PWS, contribute to the growing body of research, and hopefully aid the wellbeing of PWS families.

Brian’s story

Hello! My name is Brian and I work at the University of Galway where I teach psychology. I have worked at the university for more than two decades and my main teaching areas relate to the psychological aspects of stress, health, and society.

But most importantly, I am also a father of Louis, a fantastic young man who has Prader-Willi syndrome. Louis is now 19 years old, so I have been living with PWS for quite some time now.

My wife and I also have another child who is younger than Louis, so she has lived with PWS all her life.

Our family has experienced all the ups and downs of PWS and we are very aware of the joys as well as the challenges. As we know in the PWS community, the condition creates so many issues for families. As well as the many medical appointments and struggles to access services, we also have the day-to-day issues trying to support our loved ones to have a happy life.

We have always found that families carry a huge burden that is often overlooked as we focus on our loved one with PWS. It would mean so much to me if you could participate in our study, so that we can help others to understand what it is like for families like ours to live this PWS life.