Not-so-Rare: Learning Through Lived Experience - Ehlers Danlos Syndromes

By: Sandy Smeenk, Oakville, Ontario

My lived experience intersects patients’ needs in the community on a personal and professional level. My family live with a rare condition called Hereditary Spastic Paraplegia (HSP), which presents in males with physical impairment with a gait that is not unlike that of people with Tethered Cord Syndrome (TCS) or Cerebral Palsy (CP). My now, 21-year-old son has been supported well through the CAPHC membership and through their introductions to community services, in sport. He has attended two World Championships, represented Canada at the RIO Paralympic Games. He has been raised and supported with a ‘Dream, Desire, Do’ attitude.

My 23-year-old daughter has the same rare condition but it affects her with invisible impairments including chronic pain. As her mom and the co-Founder of a charity that aims to improve the lives of children and individuals with Chronic Pain and Ehlers Danlos Syndromes (EDS), I started to recognize in my daughter, symptoms that resonated with those of the people I supported at work. Unbelievably, she was diagnosed with EDS. She was raised with the same ‘Dream, Desire, Do’ attitude, only with the support at the community level that my charity could provide in our sharing resources with her doctors to help them see beyond their respective areas of expertise.

My experience speaks to the way society as a whole respond to rare and invisible impairments. It speaks to the enormous gaps in research and within healthcare as it relates to Canada’s need for a National Pain Strategy.

In response to these gaps, as a place to begin, multidisciplinary specialists have been brought together to compile best-evidence resources, that have been informed through patient-engagement and physician collaborative learning. The link below provides this in a series of presentations, including those that are CME accredited: Not-so-Rare: Learning Through Lived Experience - Ehlers Danlos Syndromes

Sandy Smeenk
Co-Founder and Executive Director
The ILC Chronic Pain and Ehlers Danlos Foundation
A14-481 North Service Road West
Oakville, Ontario
L6M 2V6
(416) 822-3494

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