The Ehlers-Danlos Society recently hosted its first-ever Ehlers-Danlos Learning Conference in Australia, a widely successful event that spanned the continent with sessions in both Sydney and Perth. These conferences allowed both patient groups and health professionals to learn from and collaborate with world-leading experts in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The events also brought together the EDS/HSD communities in Australia and surrounding countries including New Zealand and Fiji for a rare opportunity to network with one another.
BECOMING ZEBRA STRONG – A SPECIAL SCREENING EVENT
On Wednesday, 5 December, The Ehlers-Danlos Society staff kicked off the week in Sydney with the last stop of the 2018 Becoming Zebra Strong tour. This event featured a special screening of the documentary “Issues with my Tissues” hosted by Lara Bloom, International Executive Director of the Ehlers-Danlos Society and focus of the documentary. An enthusiastic crowd attended this free event held at Ultimo Community Centre.
“Beginning our conference week with the Becoming Zebra Strong tour stop was fantastic,” stated Lara Bloom. “The Ehlers-Danlos Society has never been to Australia before. I had the chance to chat with several people at the screening and really get a sense of what it is like to live with EDS and HSD in the region. These conversations were invaluable and helped us gain a sense of what we as an organization should focus on during the conferences in order to make the biggest and most positive impact we could. I’m so thankful to everyone who took the time to share their story.”
SYDNEY PATIENT DAY
Friday, 7 December was Sydney Patient Day, a sold-out event that brought patients and caregivers together at Macquarie University to learn from an impressive lineup of international and local EDS/HSD experts.
The day began with a special presentation honoring Professor David Sillence, a dedicated geneticist from Sydney who was among the first physicians to take a special interest in the EDS/HSD patient population, advancing patient care, research, and awareness of EDS/HSD among medical professionals in the region. Lara Bloom presented Professor Sillence with a lifetime achievement award in recognition of more than 40 years of service to the EDS/HSD community in Australia and beyond. She noted that Professor Sillence’s work was a catalyst for much of the current progress in EDS/HSD in the region.
“There is a lot of great local work being done,” stated Bloom. “What we wanted to do with this conference is bridge the work here in Australia with the international community. We want to unite the different EDS/HSD communities because fragmentation is the enemy to progress; we’re all stronger together!”
Notable sessions included a presentation on hypermobile Ehlers-Danlos syndrome (hEDS) vs HSD from United Kingdom rheumatologist Dr. Helen Cohen, a discussion on the navigation of medical care lead by a panel of local patients and medical professionals, a lecture on managing pain from Sydney physiotherapist Dr. Verity Pacey, and a discussion of GI issues & nutrition in EDS/HSD with American physical medicine and rehab specialist Dr. Heidi Collins. Session breaks allowed patients and speakers to network with one another as they discussed the presentations so far.
“I’ve been in Sydney for a very, very long time and I’ve already met new patients and health professionals that I didn’t know,” stated Dr. Verity Pacey, one of the local organizers of the event, during the morning break. “I think it’s amazing for us all to connect.”
Some attendees had never before met another patient with EDS, such as Pranil, who traveled from Fiji to attend Sydney Patient Day. “I’m from Fiji National University,” Pranil told Lara Bloom. “I’m a medical student and I’m here to bring awareness about Ehlers-Danlos syndromes in my country, Fiji, where these conditions are not well known.”
“I am overwhelmed by the enthusiastic, positive feedback from so many here in Sydney,” noted Stacey Simmonds, Event Manager for The Ehlers-Danlos Society. “Patients who were initially unsure if they could physically handle this event were coming up to me and letting me know how excited they were to find another zebra who lives in their town. Even our volunteers, an amazing group of physio students and alumni from Macquarie University who were so integral at making this day a success, were thanking us for the opportunity to make connections with international experts in their field as they learned more about EDS and HSD. We couldn’t be more pleased with Day 1 of our Australia Learning Conference!”
SYDNEY HEALTH PROFESSIONALS DAY
Saturday, 8 December, nearly 100 physicians, nurses, physiotherapists, other health professionals, and students gathered at Macquarie University for Day 2 of the Ehlers-Danlos Society Learning Conference: Sydney Health Professionals Day. This event featured presentations and workshops focused on helping health professionals that work with EDS/HSD patients provide higher levels of patient care.
“This conference is a good way of getting the latest bits of information, so that when we’ve got complex EDS patients—and most patients with EDS are complex patients—finding out another way we may be able to help somebody is really important,” stated rheumatologist Dr. Fraser Burling, who traveled from New Zealand to attend the conference. “Making contacts and establishing communications with colleagues can also be really helpful.”
Notable sessions included a discussion on EDS and HSD multisystemic involvement with Australian pediatric rehabilitation specialist Dr.Louise Tofts, an update on research in therapy for joint instability with Belgian physiotherapist Dr. Inge de Wandele, and a presentation on multidisciplinary management services in Sydney with Sydney Prof. David Sillence.
“I’m a physio from New Castle and I also have a daughter with HSD,” stated attendee Katie. “It’s great to see the absolutely amazing research that has been going on from international experts. It’s going to take me a while to process all the information I’m learning, but I’m absolutely having the best time and I’m very thankful for the opportunity to be here.”
At the conference, more than half of the attendees took the initiative to add themselves to The Ehlers-Danlos Society’s Medical Professionals Directory, confirming their ongoing commitment to the EDS/HSD patient population. The directory helps patients to find health professionals in their region who have expressed their interest in accepting EDS/HSD patients in their practice.
“One of the most important functions of our organization is to help improve EDS/HSD patient care across the globe,” stated Shane Robinson, USA Executive Director of the Ehlers-Danlos Society. “It’s so powerful to witness days like today and think about how many patients these 100 individuals will be able to help when they return to their communities, especially those who have shared with us their plans to educate their local colleagues. We are so thankful to each and every health professional who attended the conference and joined our provider directory.”
PERTH PATIENT DAY
Monday, 10 December brought the team to Perth in Western Australia for Day 3 of the Ehlers-Danlos Society Learning Conference: Perth Patient Day. This event, held at Curtin University, once again sold out, with 165 attendees eager to meet others and learn from world-renowned EDS/HSD experts in what is considered the most isolated city in the world.
“I have Classical EDS and I wanted to not only educate myself and find out the newest info but also meet other patients like me,” noted conference attendee Chloe. “I have met very few EDS patients before this event. This is a chance where I’ll probably be around more other patients than I ever will be in my entire life, so I thought that would be exciting.”
Perth Patient Day featured presentations on dysautonomia & fatigue management with United Kingdom physiotherapist Dr. Jane Simmonds, optimising participation and quality of life in children with HSD and hEDS with Australian physiotherapists Dr. Verity Pacey and Nicole Pates, and mental health management with Australian psychologist Dr. Vance Locke and occupational therapist Jacintha Bell.
“I really wanted to participate in this conference because it’s a condition that not a lot of people know about,” stated 4th-year physiotherapy student and volunteer Baldwin. Curtin University physiotherapy department students provided much-needed general event support in exchange for the chance to network and learn from the speakers and patients in attendance at this event. “That’s why I want to learn more about it so that I can help patients who may come through my doors and help them the best I can.”
“It has really been such an amazing conference, both in Sydney and now Perth,” stated Lara Bloom. “We have enjoyed getting to know new zebras that we have never met before, listening to new information, seeing how much this is going to make a difference to their care and treatment, and building a stronger community of medical professionals.”
PERTH HEALTH PROFESSIONALS DAY
Tuesday, 11 December, the final day of the Ehlers-Danlos Society Learning Conference in Australia, brought together around 130 practitioners at Curtin University for Perth Health Professionals Day. The conference was truly multidisciplinary, with physiotherapists, occupational therapists, general practitioners, podiatrists, psychologists, massage therapists, radiologists, and paediatric specialists represented, among others.
Lara Bloom opened the day by spotlighting the work The Ehlers-Danlos Society has done to encourage expanded research and international collaboration among the EDS/HSD experts around the globe, from the establishment and support of the International Consortium to the Global Patient Registry. United Kingdom physiotherapist Dr. Jane Simmonds delivered an incredibly impactful and moving presentation on the role of allied health in hEDS/HSD, and local rheumatologist Dr. Kevin Murray delivered an entertaining and informative presentation on making sense of hypermobility in Western Australia.
“It’s really been quite eye-opening to see how much it all overlaps and how deep EDS really goes,” stated physiotherapist attendee Mark. “I’m very new to EDS and working with EDS patients, so for me, this has just been a massive introduction to everything.”
The afternoon multidisciplinary treatment workshop rotations broke the attendees and presenters up into small groups for an in-depth look at chosen topics most relevant to their practices. These workshops allowed participants the chance to interact more with the EDS experts and each other as they discussed their respective topics in small groups.
“I actually did my physiotherapy post-graduate specialization here at Curtin,” stated Dr. Jane Simmonds, conference speaker and member of the conference organizing committee. “It’s very emotional for me to be here because some of my old students are here, I’ve got some of my best friends here attending today, and it’s a very moving experience to have been away for a bit and come back and share what we have been learning and help take the community further. I think knowledge is growing.”
FINAL THOUGHTS
“What an amazing experience,” exclaimed Lara Bloom. “The locals were so welcoming and excited to be a part of this experience. We made great strides in educating both patients and health professionals in a region we have never had the opportunity to reach in person before. The attendees were eager to learn and get involved. I found it interesting that Australia seemed to be at the forefront of EDS/HSD knowledge and research in the paediatric specialties. I know the connections we made will help us grow and learn from one another as an international community, and I’m excited for the path ahead.”
The Ehlers-Danlos Society staff wishes to express their sincere gratitude to the Australian organizing committee, including Dr. Jane Simmonds, Dr. Susan Morris, Assoc. Prof. Leslie Nicholson, Dr. Verity Pacey, Robyn Hickmott, and Nicole Pates, all contributing speakers, host institutions Macquarie University and Curtin University, and volunteers from the Macquarie and Curtin physiotherapy departments.
