The ILC are working with a multidisciplinary team of medical professionals from across Canada and internationally, to improve understanding of difficult to diagnose chronic pain diseases. The outcomes of this work will help to bridge gaps in evidence based diagnostic and treatment criteria of a broad group of chronic pain diseases, utilizing connective tissue disorder Ehlers-Danlos Syndrome (EDS), as a model of optimal care.
- Pain Measurement and Beecher’s Challenge (PDF)
- What do the parents of children who have chronic pain expect from their first visit to a pediatric chronic pain clinic? First visit to a pediatric chronic pain clinic (PDF)
- Ethics Approved Research – Ehlers -Danlos Syndrome
Nicoleta Woinarosky, BSocSc (Hon), MHK (Masters Human Kinetics)
|After a 20 year career as a social researcher in the Canadian government, Nicoleta gave-up full time work as a result of EDS, but continued part-time volunteer work. In 2009 she began volunteering with the Arthritis Society, which promotes active lifestyle as a weapon against chronic pain and pain related mental health issues. For five years she was an Arthritis Self-Management Program leader, which involved teaching courses and workshops on Chronic Pain Management. From 2011-2014, she volunteered as an Exercise Coordinator with a small senior’s residence in Ottawa.
As a Health Resource Consultant for the Improving the Life of Children & Families Charitable Foundation (“ILC”), she currently uses her education and experience to provide evidence based information in response to questions about many chronic pain syndromes, including EDS. As a representative of the ILC and EDS in Canada, Nicoleta participates on the Physiotherapy Working Group for the EDS International Symposium and co-authored “The Evidence-Based Rationale for Physical Therapy Treatment of Children, Adolescents and Adults Diagnosed with Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome”. She uses every opportunity to provide information about EDS to health professionals. She lives with EDS, chronic pain, and has had an improved quality of life due to cranio-cervical fusion and tethered cord surgery.
Drawing on her lived and volunteer experience, and her Master’s thesis in Human Kinetics (The Effects of Exercise/Physical Activity on Chronic Pain and Pain Related Mental Health Issues), Nicoleta has provided presentations on the physical and psychological benefits of exercising to government and academic audiences, senior residences, the Arthritis Society, and the ILC – EDS conference.