P.E.I. Woman Describes Challenges Accessing Care for Suspected Ehlers-Danlos Syndrome

Christine Gordon Manley, now 47, began experiencing severe knee pain around age 12. At the time the discomfort was dismissed as growing pains. Pain later spread to her hands, jaw and other joints. I. concluded that Gordon Manley likely has Ehlers-Danlos syndrome, an inherited group of disorders affecting connective tissue.

She has not received an official diagnosis because the province has no specialist for complex connective tissue disorders.

Manley said pain is present every day and increases as the day progresses. A flare-up last year left her on the couch for a month with severe nausea. She works from home as an editor and changes work stations several times a day to reduce discomfort.

The EDS Canada Foundation estimates that more than 126,000 Canadians live with hypermobile EDS, the subtype Gordon Manley believes she has. Symptoms include chronic pain, frequent joint dislocation and muscle fatigue. There is no known cure, but treatment can help manage symptoms.

Manley said she receives local pain management support but cannot access out-of-province specialty clinics. I. stated that primary care and symptom management services are available and that the province has made strides in serving Islanders with complex chronic conditions.

Gordon Manley said insurance coverage is limited and that many treatments, including acupuncture, massage therapy and osteopathy, are paid out of pocket. She proposed expanding the disability tax credit to include a chronic pain category and adding specialized patient navigators to help residents locate appropriate care earlier.