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. https://news.ontario.ca/mohltc/en/2017/02/ontario-expanding-clinics-for-people-living-with-rare-diseases.html
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.
