The 2018 Heritable Aortic Disorders Symposium
An Attendee’s Perspective
By Lindsay Parsons
Together with LDSF Canada and the Genetic Aortic Disorders Association Canada (GADA), the Heritable Aortic Disorders collaborative brought a two day symposium to Toronto that can be described as nothing short of amazing! The two fully packed days were dedicated to educating and connecting healthcare professionals, patients and family members. Although this symposium was dedicated to all aortic disorders, LDS was at the forefront of most discussions.
Day 1, November 30, 2018
The first day brought Physicians and Scientists together to hear presentations on genetics, counselling, risk assessment, medical management, and surgery. These presentations beautifully summarized the current research in these fields, but it was what happened after each presentation that was even more incredible. The floor was opened up to comments and questions from attendees. Many times, lines were formed at the two microphones placed in the room. Attendees brought forward both general questions and specific cases. Not only did the panel and presenter weigh in, but so did many other healthcare professionals in attendance. Experiences, opinions and perspectives were openly shared. Physicians shared what they are doing in their clinics across North America and what they have seen work. The room was filled with compassion for the patients these physicians care for and a strong drive to improve these patients’ care and their lives.
Day 2, December 1, 2018
The second day was focused on Patients and Families. During opening remarks LDSF Canada co-founder, Joseph Galli, asked the crowd a quick favour. He first asked all healthcare professionals to raise their right hands. He then asked all patients and family members to raise their left hands. It was immediately obvious that the ratio of professional to patient/family member was nearly one to one. Each attendee was given the opportunity to spend their day with professionals who specialize in aortic disorders.
The day was split into two sets of presentations followed by workshops. The first presentations were focused on Diagnosis, Treatment, Genetics, and Surgery. The attendees then split into separate workshops that allowed for informal conversations with the healthcare professionals who specialize in each area of discussion. Many of the discussions in these workshops were driven by patient and family questions: the questions that were on everyone’s mind, and the questions that we often don’t think to ask. The attendees learned a great deal from hearing each other’s stories and from hearing answers to each other’s questions. The second half of the day followed the same format of presentations and workshops, this time focusing on Ophthalmology, Orthopedics, and Pain Management.
Take Home Messages
Both days were filled with opportunity for connection. Physicians collaborated, patients had the chance to ask professionals every question they could think of, and patients connected with each other as well. One resounding message that was shared on the Patient and Family day is that you are not alone. There are outstanding physicians and scientists who are fighting and working for you, and there are other patients and their families who are ready to stand by you. If you are looking for support, the “Loeys-Dietz Families” Facebook page is a great place to start. You can use the search bar to find information already talked about or ask the almost 2000 members for advice and support anytime.
Another message that was shared time and time again was that a patient needs to be their own advocate. Patients and families were encouraged to fight for the care that they need. They were encouraged to take responsibility for their diagnosis and insist on not allowing the medical system to sweep them under the rug.
Future symposiums are currently being planned, with next year’s being set in Montreal. Feedback and questions about this and future symposiums can be directed to info@