While the PDSA held their first Regional Meeting in Australia in March 2018, they hold a conference annually in the USA bringing together carers and patients and providing new information on ITP through their growing network of medical advisors.
The Platelet Disorder Support Association hosted its annual conference in July in Cleveland Ohio, providing much-needed support, information and assistance from some of the world’s leading ITP experts.
This year’s packed program included a welcome hike, small group discussions, teen and women-focused sessions, educational dinners, and panels of exceptional medical advisors presenting on a wide range of ITP topics.
There was a deep-rooted feeling of community, support and care throughout the weekend. An important part of the conference involved patients sharing their stories – to not only voice their own personal struggles but to also relate and learn from others facing similar difficulties.
Last year’s conference highlighted the need to discuss the emotional side of living with ITP, including depression and anxiety. Stress management specialist Dr Francoise Adan presented this year; discussing tools that can help patients cope better, thereby helping to alleviate the negative mental impact.
Unmanaged stress can have such a huge impact on the physical effects of ITP – and she asked the attendees to pinpoint how stress affected them. She spoke of the importance of recognising when stress takes control and what actions to take in these moments – perhaps watching a favourite movie, taking a walk, meeting a friend for coffee or enjoying a relaxing bubble bath.
Devoting time and energy to improving one’s mental health is absolutely critical in coping with ITP, so it was wonderful hearing Dr Adan speak on this extremely important topic.
Other speakers focused on the latest drug breakthroughs, assistance for caregivers, emotional support and how parents can help their children to live with this chronic disease.
The Saturday night party provided a fantastic chance for patients, friends and families to laugh, dance and bring a little fun into their lives.
Attendee feedback included an appreciation for the increased understanding of treatment options, as well as a wonderful feeling of camaraderie throughout the weekend. To be surrounded by people who understood and cared was hugely beneficial, whilst many felt that just being there was a great source of comfort and provided huge emotional support.
- You can get your own copy of the videos from the PDSA Conference from here
- The PDSA 19th Annual Conference has been announced! Save the date for 26-28th July 2019 in Washington DC. Head here for more details
ITP Australia is hoping to hold its first Australian ITP Conference in 2019 – so keep your eyes peeled for further announcements. If there are any particular areas or topics that you’d like to see included in the first conference, please get in contact with us at info@ITPAustralia.org.au.
As always we would love to hear from you with any comments – especially if you would like to share your personal story or any ITP-related experiences that you feel may help others. Together, we are stronger.