The 4th Annual HAE Australasia Patient Meeting was held at the Novotel Sydney Olympic Park. The 64 attendees were there to share stories, and to learn more about living with HAE.
Professor Connie Katelaris outlined the facts of HAE and treatments available now and possible future therapies. She spoke of the importance of patient participation in surveys to document quality of life improvements. The patient group were then given an opportunity to consent to and take part in one such study.
Associate Professor Rohan Ameratunga outlined the clinical utility of genetic testing in HAE. He discussed using genetic testing to confirm a diagnosis of HAE as well as possible pre-implantation testing of embryos prior to conception. He described HAE as a disease of the liver as the liver does not produce active C1 protein. The potential for future treatments based on genetic modification was outlined.
Jarrod Willers shared his Patient Story with us. It was a frank and moving tale of his own delayed diagnosis, and the great challenges of teenage daughters who suffer with severe symptoms of HAE.
Dr Christopher Basten, a Clinical Psychologist discussed coping with a uniquely stressful chronic medical condition. He likened it to being a lighthouse keeper, ever alert for problems that may or may not occur. His take home message for coping can be defined as Accept and Adapt.
We were honored to have representatives of HAEi, the international patient organisation for C1 Inhibitor deficiencies, at our meeting on such a notable day in the HAE calendar, hae day:)
Henrik Balle Boysen the executive director and Anthony Castaldo the President updated us on the growth and development of HAEi. The new website was released on hae day:) and the announcement of Madrid as the venue for the 2016 Global Patient Meeting. They spoke of their own patient stories, treatments and developments globally, and of the need for better access to those treatments.
HAE Australasia was happy to announce Ryan Bogoyevitch as the winner of our Young HAEro award. His sister Jess nominated him as a supportive brother that helps and inspires her.
The HAE day:) T-Shirt design design was won by Rhianna King. Everyone at the patient meeting was given a shirt to wear in our Haeday:) photo.
The Q & A Panel of Prof Connie Katelaris, Assoc. Prof Rohan Ameratunga, Dr Christopher Basten, and Mr Henrik Boysen had many questions and discussions raised from patients and caregivers.
All the participants spoke highly of the chance to meet with others that share their story. In many cases it is the first time a HAE sufferer has met someone else with the condition. It is of great benefit to bring your family to meet the family at Patient Meetings. Next year we will be hosting a meeting in Perth, and also one in Auckland for our New Zealand members.