KEY NEWS AND ANNOUNCEMENTS

Ehlers-Danlos syndrome: patients denounce how Quebec lags behind Ontario and ask the Minister Gaétan Barrette to intervene to stop errors in diagnosis

MONTREAL, March 21, 2017 /CNW Telbec/ – On the initiative of the Regroupement québécois des maladies orphelines (Quebec Coalition of Orphan Diseases), people affected by the Ehlers-Danlos syndrome assembled for a press conference to testify about the errors and difficulties they face with the medical management of their condition.

Ehlers-Danlos syndrome designates a group of hereditary diseases of the connective tissue characterised by joint hypermobility and tissue fragility which result in numerous symptoms, including repetitive dislocations, chronic pain and many other disorders of various systems and organs (gastrointestinal, gynecological, vascular, neurological, urological, etc.).

Even if the Ehlers-Danlos syndrome has been known for more than 100 years, still today, few doctors know how to recognize it. Patients (often several members of a same family) meander in the health system, going from one specialist to another, without obtaining a diagnosis or with a wrong diagnosis. And, in the case of women, who are more severely affected, they are told to go consult a psychiatrist. Because it is under-diagnosed or wrongly diagnosed, this syndrome may not even be rare and could affect thousands of Quebecers.

Last week, an international consortium of experts unveiled new guidelines that will facilitate the diagnosis and management of this disease. Furthermore, the Ontario government just announced a major investment to establish a specialized clinic for patients with Ehlers-Danlos syndrome as exists in other countries.

The RQMO proposes two measures to end the diagnostic odyssey of those affected by this syndrome and to ensure that they get better medical management:

  • the establishment of aspecialised multidisciplinary clinic for Ehlers-Danlos syndrome;
  • the adoption of aQuebec Strategy for Rare Diseases to help improve the diagnosis, management, treatment, prevention, research and psychosocial support for rare and orphan diseases.

For information on the Regroupement québécois des maladies orphelines : www.rqmo.org

SOURCE Regroupement québécois des maladies orphelines (RQMO)

For further information: Gabriel Dupuis, communication consultant, (514) 951-7577 – gdupuis@2000neuf.com


ILC Successfully Advocates for Increased Services for Children with Chronic Pain

In January 2013, the ILC met with representatives of the Ministry of Health, advocating for services for children and youth living with underserviced chronic pain related to Ehlers Danlos Syndrome (EDS) and other chronic pain conditions.  At that time, the MOH reported working on a framework for adults with pain but they did not have pain in children on the radar.  A large round table meeting resulted in a number of working groups with representatives from Ontario’s children’s hospitals.  Outcomes of needs assessment resulted in the following MOH announcements in 2015:

Services for Children’s Pain Expanded in Ontario

On March 6, 2015, the Ontario Ministry of Health and Long-term Care announced the creation of a Paediatric Chronic Pain Network. The Ministry has dedicated $3.6 million per year to expand and establish pain services at five Ontario hospitals including the ILC proposed 21-Day Program at McMaster Children’s Hospital. Read the press release at http://news.ontario.ca/mohltc/en/2015/03/expanding-access-to-chronic-pain-treatment-for-children.html.

Pilot Program

Services for Children’s Pain Expanded in Ontario to include Pilot 21-Day+ Pediatric Chronic Pain Rehabilitation and Wellness Program

The ILC Foundational Plan presented to the MOH in January 2013: Foundational Plan 2011 – 2018 (.docx)

The ILC medical and allied health Workshop to vet 21-Day+ Chronic Pain Program on Saturday, October 1, 2011

Attendees:  Dr. Norm Buckley, BA (Psych), MD, FRCPC; Dr. Jennifer Stinson, PhD, RN-EC, CPNP; Dr. Bruce Dick, PhD; Dr. Stephane Treyvaud, MD, FRCP (C), FMH (Switzerland); Christina Pridmore, R. Kin, Stott Pilates Instructor, Osteopathy Graduate; and Michael Sangster, Physiotherapist, Clinical Specialist (Pain Science), Rebecca Mills, Kris Mills, Sandy Smeenk

21-Day Components of Care

21-Day Program Model Client Schedule

21-Day Organizational Chart

  • Ehlers Danlos Division

    Ehlers Danlos Division of the ILC
    Mission

    To inspire hope and contribute to the health and well-being of children and individuals living with Ehlers Danlos Syndrome (EDS) by providing a care model of health promotion and knowledge sharing partnerships through a family centred, awareness and education resource network.

  • Announcements

    ILC Centre of Excellence – Toronto Stay Tuned

    ILC Support and Accessibilities Centre specializing in EDS and related conditions that cause altered physical abilities – Stay Tuned

    For more information, contact
    Sandy@theilcfoundation.org

  • Research Projects

  • National Pain Strategy

  • Upcoming Events

    1. Halifax Support Group Meeting

      July 9, 2017 @ 10:00 am - 12:00 pm
    2. #StillStanding

      July 9, 2017 @ 1:00 pm - 4:00 pm
    3. Halifax Support Group Meeting

      August 13, 2017 @ 10:00 am - 12:00 pm
    4. 11th Annual Classic Rhythm & Blues Boat Cruise

      August 19, 2017 @ 12:30 pm - 5:00 pm
    5. Teletime Charity Golf Classic

      September 5, 2017
The ILC Foundation

The ILC Foundation