In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time management and care guidelines have also been produced for the co-morbidities that can occur within EDS and HSDs.
As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed.
For further information please visit the links below:
Tammy Stadt of the ILC York/Simcoe EDS Support Group raises awareness at the Rare Disease Connection event that was hosted in Barrie City Hall Rotundra. The event was to connect Rare Diseases, give the opportunity to educate the community and medical professionals while offering connections for persons living with Rare Diseases.
The ILC Charitable Foundation Ehlers Danlos Division team, including its medical advisers continues to work closely with the Ministry of Health, the Hospital for Sick Children and the University Health Network with the announcement of expanding clinics for people living with rare diseases and EDS.
The ILC Charitable Foundation Ehlers Danlos Division Speech at the Ministry Press Announcement:
“Thank you Honourable Minister Hoskins and Honorable Minister Coteau, Dr. Pisters, Dr. Baker, Mrs. Kinnear, members of the Ehlers Danlos Syndrome Clinic, the EDS Leadership Panel and members of the press. Hello
Six years ago, when Rebecca and Kris Mills asked if the ILC Foundation would take on EDS and chronic pain as a permanent charitable focus, Rebecca and I were told by Canada’s leading pain specialists that EDS was so rare, they would never see it in the lifetime of their practice.
Today, with the advancement of awareness and education, of the 20% of Ontarian’s living with misunderstood chronic pain, it is estimated that as many as 1 in 100 will have EDS.
Through the advocacy of patients, who have publicly given voice to their complex healthcare needs, and to the Crawford family who shared their story through an 8000 signature petition, and through the support of the ILC medical advisers some of whom are here today, Dr. Juan Guzman, Dr. Roberto Mendoza, Dr. Norm Buckley, Dr. Allan Gordon who helped to champion this cause as co-chairs of the ILC EDS annual conference, yet most importantly, through Minister Hoskins initiating an EDS leadership panel and the outcome of today’s announcement of funding, for a dedicated EDS paediatric and adult care clinic at the Hospital for Sick Children and the University Health Network, HOPE is inspired!
It is important to note that there is a great need for research in to the cause and cure of EDS. There is a tremendous amount of work to be done to bridge gaps in the understanding of this complex condition but, with today’s announcement, a tremendous step has been taken in the right direction and should prove to be an excellence model for other provinces to follow. The ILC looks forward to supporting the clinic and the efforts to ensure that these patients no longer fall between the cracks of care in the community.
Minister Hoskins, your staff, and the specialists that have helped to make this happen, we thank you!
Photo: Susan Carleton, ILC Manager, Special Projects, Hon. Minister Eric Hoskins, Rebecca Mills, ILC Director, Sandy Smeenk, ILC Director, Dr. Juan Guzman, General Internal Medicine, Assistant Professor, McMaster University, ILC Medical Adviser.
Each year, the ILC awards a health professional with a CHRONIC PAIN & EDS AWARENESS certificate of recognition.
At this time, Minister Hoskins, we would like to invite you to join us to receive your award in recognition of your leadership to advance care to people of all ages living with the complex care needs of EDS. Thank you!”
This event follows the first Provincial Pain Summit, which was held in 2011. That event provided Pain BC and our many partners with recommendations for action. Since then, we’ve been working collaboratively with the Ministry of Health, Doctors of BC, health authorities, NGOs, and others to implement the priority actions.
The Summit in February will focus on surfacing issues and developing solutions around five themes:
Primary Care: Increase the capacity of primary care providers to provide evidence-based pain assessment and management, including non-pharmacological approaches
Pharmacological Pain Management:Improving assessment, balancing harms and benefits and advancing appropriate pharmacological pain management for patients across the continuum of care
Pain in Rural BC:Expand access to pain management (pharmacological and non-pharmacological) services in rural and remote parts of the province
Seniors in Pain: Improve pain assessment and management (pharmacological and non-pharmacological) for seniors
The Summit will kick off on Friday night with the stories of people living with pain and a response panel that explores the implications of these lived experiences for programs and policy. Saturday will involve several interactive sessions – both large and small group – and result in priorities that will be taken forward into action planning by a smaller group of health system leaders on Sunday morning.
There will be a comfort room, sponsored by PainPRO RMT clinics, available for people in pain who need to take a break. For those unable to attend, we’ll be posting updates on our social media channels (including live Facebook videos); search for #BCPainSummit to stay a part of the conversation. Attending the summit? Download the Pain BC app for updates, the schedule, and more!
The Summit is a pivotal opportunity in the larger effort to transform how pain is understood and treated in our province. Please join us and bring your experience and knowledge to the process.
The ILC Charitable Foundation – Ehlers Danlos Division
Over the last few weeks, recent reports in the media related to a University Health Network (UHN) based neurosurgeon, Dr Shamji, has caused concern regarding the future care for patients with Ehlers Danlos Syndrome (EDS) at the UHN. We have been in touch with the UHN to clarify plans for ongoing care for patients who were referred and/or booked for surgery or consultation with Dr Shamji. Please find below a statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN:
“As you can imagine, the arrest of Dr. Mohammed Shamji has come as an enormous shock to his patients and to everyone here at the hospital. UHN would like to clarify the current situation with respect to access to spine surgeons for patients with Ehlers Danlos Syndrome (EDS) who were under the care of Dr. Shamji. The neuro/surgical team at Toronto Western Hospital has four skilled spine surgeons, each capable of doing treatments and assessments for complex spine patients, including EDS patients.
We are currently re-assigning all of Dr. Shamji’s patients to one of our other spine surgeons for follow-up. We continue to care for EDS patients along with all of our other patients and, as is standard practice, are triaging all patients according to medical need.
Our immediate priority has been to contact patients who were scheduled for surgery or clinic appointments in the months of December and January. When this is complete, we will then begin to re-assign patients who are booked later in the year. Please know that every patient chart must be reviewed by a surgeon to align the right patient with the right surgeon. As we are adding patients to existing practices, the ripple effect of absorbing new patients is not insignificant; however, we are working as quickly as possible to ensure appropriate transfer of care, and a visit with the new surgeon in accordance with level of urgency.
As always, any patient who has an urgent medical situation should present at their local emergency room.
We look forward to continuing to provide care to you and are saddened by the recent series of events. Many thanks for your understanding and patience as we work through this matter.”
The ILC recognize and respect how hard the UHN is working to triage the most urgent cases and reassigning patients that had post-surgical appointments, including those that have been waiting for their referral appointments with Dr. Shamji. We also acknowledge the loss in expertise that Dr. Shamji brought as a scientist in the lab work he was doing to study and advance understanding in chronic pain and EDS and look forward to learning how this work will continue. We will continue to work collaboratively with the UHN to advance the care and understanding of the EDS population.
Through the leadership of the ILC Foundation, both in the area of Ehlers Danlos Syndrome and Chronic Pain Diseases advocacy work, a joint EDS Clinic has been established at the UHN and SickKids. Collaborations among multidisciplinary specialists are taking place and we are confident that access to care will continue to improve, based on early diagnosis and treatments of this patient population.
One of the outcomes of the ILC & McMaster University Canadian Medical Education EDS conference and the EDS Clinic discussions, is the need to expand primary care education on clear diagnostic criteria for EDS, as noted by Dr. Kristianna Martiniuk, MD and ILC medical adviser. “A better understanding of commonly associated conditions and of the condition’s prevalence in the general population is important. With improved case finding, education regarding appropriate referrals to specialized centers would be equally important to avoid delays in confirming the diagnosis and accessing care for individuals with EDS” said Martiniuk.
The good news is that EDS is beginning to be better recognized. With the newly funded EDS Clinics in Toronto, for pediatric and adult care, there is a multidisciplinary focus on early diagnosis and treatments.
Dr. James Rutka, Chair of the Department of Surgery at the University of Toronto, co-Chair of the EDS Leadership Panel and medical adviser of the ILC, is in communication with international experts including Dr. Fraser Henderson, who has shared his expertise as a presenter at the ILC & McMaster conference over the past four years. “It is encouraging to see the level of interest in this area of specialized surgery and among residents.” said Dr. James Rutka.
According to Dr. Fraser Henderson, “Ehlers Danlos Syndrome is a tragically under-diagnosed disorder of immense importance affecting one in every hundred persons of the population, and involving virtually every organ system of the body. It is the lack of diagnosis that results in failure to treat EDS at a young age, and the resulting necessity for more extensive treatments and surgeries when the patient reaches the third or fourth decade. The number of patients suffering from undiagnosed EDS manifest enormous medical-economic impact, substantially adding to the disabled of Canada. It is appropriate that Canadian neurosurgeons, who have been leaders in vascular, pediatric, spinal and epilepsy neurosurgery, have played a central role as the first in the world to establish a national center for EDS in Toronto. The EDS center represents an exciting opportunity to coordinate treatment, as well as scientific studies and economic impact data regarding the EDS population. The Center has drawn attention from the US, where multi-disciplinary specialists with strong Canadian ties have sought to collaborate to advance the cause and knowledge of EDS.” Dr. Henderson is a world renowned neurosurgeon who is licensed to perform surgeries in the USA and Great Britain. He has treated more than 1,200 EDS cases. He was mentored by Dr. Phanor Perot, who was trained in Canada by Dr. Wilder Penfield at the Montreal Neurological Institute. Dr. Henderson is leading discussions in the United States and Great Britain on the economic problem that EDS presents if not treated early.
According to Sandy Smeenk, Executive Director, ILC Foundation, “What we have to remember is that in this patient population, hope is what they hold on to most, especially when a neurosurgeon dedicates his or her interest to this area of specialized care. When they are faced with experiences that takes hope away, hope is what they end up fearing most. Communication and validating the very real symptoms of health issues is critical. We have to move past specialists saying ‘the pain is not real’ and get to evidence-based diagnostics and treatments.”
The ILC will continue to pursue the vision to provide a health integrated peer resource network, to keep patients informed. Initiatives that the ILC continues to champion are:
Advancing peer-to-peer and community based care for children and individuals with EDS and Chronic Pain
Expanding the annual ILC EDS CME Conference to include modalities of physiotherapy care and patient wellness focused programming
Host the annual conference in other cities and provinces in partnership with other advocacy groups
Facilitate the obtainment of upright MRI diagnostic capabilities at major centers beginning in Toronto
Supporting EDS and Chronic Pain Research
Awareness education through Department of Neurosurgery, School of Nursing, Social Work, College of Physiotherapy
Together, Lets make pain visible. We have included at the bottom of this page a Pain Media relations Kit. This kit will help you with Key messages, tips and guidelines for a successful media interview. Now more than ever it is important that the patient voice be heard. During Pain Awareness Week, reaching out to your local MP, MPP and/or media outlets in your surrounding area can help raise awareness and educate the public about stigmas that exists for chronic pain patients in Canada. Click on the PDF to access the kit.
Last week we took another step forward in the fight to #TreatRareDisease in Ontario. Thank you to everyone who wrote to their MPPs to support MPP Lisa MacLeod’s Private Member’s Motion. Because of you and MPP MacLeod, an advisory committee for a compassionate and catastrophic care plan will now be created. MPP MacLeaod’s motion aims to help those suffering from rare disease or whose treatments may be experimental or complimentary but are not yet covered by OHIP.
This year, Pain in Child Health is proud to collaborate with the Alberta Children’s Hospital on our new initiative, PICH2GO! PICH2GO is an exciting new series of educational and networking events co-hosted by Pain in Child Health (PICH) and local children’s hospitals. Over the course of two days, PICH2GO Calgary will provide its attendees with diverse and engaging education and networking opportunities to further pediatric pain clinical practice and research. It is our goal to engage, empower, and educate families, trainees, clinicians, researchers, and policy makers to make the world a less painful place for kids!
Our first events are on November 24. The Coping Circus will invite local trainees to work with hospital clinicians and researchers to disseminate evidence based practices to patients and families. Join us later that evening for a PICH Welcome Reception – refreshments will be provided! PICH2GO’s final events are on November 25. First will be our Clinician conference “Unraveling the Puzzle of Pediatric Pain: From Neurons to Narratives,” followed by our Researcher Networking Dinner at the Hotel Alma for all PICH trainees and faculty, including a workshop on powerful speaking for scientists! For more information and to register click on the link here.
The Improving the Lives of Children and Families with Chronic Pain & Canadian Ehlers-Danlos Syndrome Foundation support network/program cannot provide medical or pharmaceutical advice. The ILC does not endorse any one method of treatment for chronic pain. ILC encourages all people suffering from chronic pain to take as active a part in managing their pain experience as possible. The ILC encourages parent, child and adolescent to play as active a role as possible in improving how chronic pain is treated. The ILC advocates to provide as complete a support network as possible but in no way intends the resources to be a full representation of available sources of support as we are continuously updating information.