Nicoleta Woinarosky

Nicoleta Woinarosky, BSocSc (Hon), MHK

Nicoleta Woinarosky, BSocSc (Hon), MHK

Health Resources Consultant (Canada)

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 an 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 ILC Chronic Pain and Ehlers Danlos Charitable Foundation (“The ILC”), since 2013 she keeps abreast of current health research findings and shares relevant information on chronic pain anEDS-relateded topics with ILC peer leaders. She also provides evidence-based information in response to questions about chronic pain syndromes, EDS, Chiari, craniocervical fusion, tethered cord surgery, MCAS, POTS, hydrocephalus, anxiety, sleep issues, non-drug pain management including exercise, etc. She provided content and references input, and final revision to Coop students’ papers at McMaster Univ School of Rehabilitation Sciences, Masters of OT. She wrote a 2 page “EDS Overview” with an answer to a question on cure, and presented it at the webinar “CBD Pain Management in EDS/HSD.” The literature on EDS does not mention medicinal CBD as a possible treatment, nor does the literature on CBD mention EDS as one of the diseases that it targets. Thus, the webinar was the 1st source to recommend and provide information on medicinal CBD as a treatment option for EDS patients. Nicoleta also wrote a 2-page handout on “Day and Night Posture Control in hEDS/HSD.” She peer-reviewed Children’s Hospital of Eastern Ontario (CHEO) pamphlets “Tips to Exercise with Joint Hypermobility” and “Joint Hypermobility.”

As a representative of the ILC and EDS in Canada, Nicoleta participates on the Allied Health Working Group for The International Consortium on EDS and Related Disorders 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,” published in the American Journal of Medical Genetics. 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 release 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 in Computer Workers with Repetitive Strain Injuries), 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 conferences.

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