Report by Ruth Consterdine, the lead for adults on PWSA UK's support team and organiser of this event
On Saturday 5th March 2022, PWSA UK held its first mini conference for adults with PWS organised by the OWL Focus Group. We’re pleased to say it was a great success with 24 adults aged 16 and over getting involved, some with their parents or carers.
Susan Passmore, our CEO, opened the conference by welcoming the participants, followed by Charles Warner, who is a member of the Owl Focus Group. He explained a bit about the role of the group which is made up of 12 adults who represent our PWS community. Charles told us how the group discuss different aspects of living with PWS and the sort of support and activities they would like the association to provide for adults with PWS. Recently, the group have discussed what they think is important for managers, carers and other staff in residential settings to know about their condition. They also enjoy things like our adult Zoom sessions and having the opportunity to meet up with other people at events.
Susan then introduced Dr Tony Goldstone, who is an endocrinologist and a specialist in PWS. He spent an hour with us answering questions that had been sent in by people attending the conference, as well as taking questions from those attending the conference. Lots of the questions asked were about pain, particularly in the back and/or legs. This surprised Dr Goldstone, and he told the participants that he would ask all of his PWS patients if pain was an issue for them from now on.
You can see a recording of the Q&A session with Dr Goldstone
here.
(Please note that this recording shows Dr Goldstone answering pre-written questions and not the questions asked by attendees during the conference itself)
There were also questions sent in about managing diet, and Ruth, from PWSA, read out answers to these which had been provided by Chris Smith, a dietitian specialising in PWS. You can read the questions and answers on our 'I have PWS' page
here.
After lunch came the fun part of the day, where participants could choose to join in Zumba Dancercise to music or bingo. Everyone thoroughly enjoyed themselves and Alex Grussing was our bingo winner on the day. Well done, Alex! Lizzie and Hani also won prizes.
As a staff and trustee team, Susan, Patsy, Sheila, Ruth and Stephanie (a trustee) really enjoyed seeing all the people who attended this conference and we hope to do it again next year.
