The 2019 Heritable Aortic Disorders Symposium
An Attendee’s Perspective
By Lindsay Parsons
The 2nd annual Heritable Aortic Disorders symposium was a resounding success with more than 180 health professionals and 40 patients and family members in attendance! This year, the HAD collaborative hosted the event at CHU Ste. Justine in Montreal, Quebec with the goal of educating and connecting healthcare professionals, foundation members, patients, and families over 2 days of presentations, workshops and networking opportunities.
Day 1, September 6, 2019
A multidisciplinary and individual treatment approach is important.
Not only do patients need to advocate for themselves, doctors need to advocate for their patients.
There is great variability between all individuals diagnosed with Heritable Aortic Disorders.
These were just a few of the messages that often resurfaced during Day 1 of HAD 2019. Presentations on Genetics, Surveillance & Counselling, Risk Assessment & Medical Management, and Surgical Management of HAD were heard by the attendees. These attendees included the experts who pioneered many of the topics discussed, and professionals who are newly being introduced to these disorders. Local Montreal doctors cancelled rounds the day of the conference and instead insisted that their Resident Physicians attended the symposium to learn the realities and importance of Heritable Aortic Disorders.
Dr. Bart Loeys from Belgium asked the question “Where will we be in 30 years?” Dr. Reed Peyritz from Philadelphia spoke about management of heritable aortic disorders and Dr. Shaine Morris from Houston spoke about risk stratification. In all, more than 15 medical professionals spoke to their strengths at the conference, each offering a unique perspective to the medical community working with patients affected by Loeys-Dietz Syndrome and similar disorders.
Panel discussions between presentations welcomed questions and discussions driven by patient cases from the audience. In the same fashion as last year’s symposium, a room full of dedicated and compassionate professionals discussed their experiences, their research and their own strategies when presented with similar cases. The collective efforts to drive forward research, treatment plans and the care of each doctor’s patients was incredible!
In addition to scientific presentations and discussions, the attending physicians and scientists also heard a talk on “Patient and Family Perspective: What it is Like to Live with a HAD Diagnosis”. Joseph Galli’s talk reminded the room full of professionals that their patient is advocating for their lives. Afterwards, a doctor asked, “How do doctors help patients who can’t [or] don’t articulate their needs well?”. The answer: utilize the Loeys-Dietz Syndrome Foundation Canada! The foundation is available to not only support the patient, but to also support their health professionals through our aim to build multi-disciplinary treatment teams.
Day 2, September 7, 2019
Patients and families who attended HAD 2019’s Day 2 gave unanimously positive feedback! Attendees participated in presentations and small-group workshops. Dr. Francois-Pierre Mongeon from Montreal shared his expertise in diagnosis and medical treatment. Dr. Irene Maumenee came from New York City to speak about her specialty, ophthalmology and Dr. Alain Vadeboncoeur from Montreal spoke about acute chest pain: the viewpoint of the ER physician. These, and 5 other presentations, focused on educating the attendees on the Cardiovascular Manifestations and Systemic Challenges of Heritable Aortic Disorders.
The workshops were so successful that no one wanted to stop! Presentations were given in French and questions were answered in the preferred language of the attendee. This presented all attendees, English and French speaking, the opportunity to seek advice from world renowned experts without a language barrier. The workshops allowed for an intimate setting to do just that!
Patients and families left HAD 2019 with an abundance of information and connections to doctors and other patients. We can’t wait to do it all again next year!