Living Well with EDS Program
EDS Canada Foundation’s EDS Living Well With EDS Program is to provide educational resources to help Canadians living with EDS/HSD+, and Chronic Pain to create a balance between school, work, self-care and leisure activities.
We know that living with Ehlers-Danlos Syndromes, its related conditions including chronic pain can be isolating and difficult to manage. The following resources are meant to assist members in their self-advocacy needs for access to care for themselves or for family members. We encourage individuals to discuss these resources with their medical team.
This booklet Living Well with EDS/HSD+ Booklet was created by Occupational Therapy Student’s from McMaster University, with support from our leadership team: Nicoleta Woinarosky, Jacqueline Raposo, Sandy Smeenk, Tammy Stadt, our Wellness Ambassadors and most importantly for everyone with lived experience.. Download your copy which includes forms and templates, activity sheets and helpful links: Living Well With EDS/HSD+ Booklet 2025
Also, please look at booking a Wellness Session for additional resources or participating in our Virtual Support Group.
For more Resources from Nicoleta, please see her bio.
For support and resources in French, please see our partner: Constellation – troubles héréditaires du tissu [email protected] Support group : https://www.facebook.com/groups/soutien.constellationthtc Facebook page : https://www.facebook.com/constellationthtc Website: https://www.constellation-thtc.org
Diagnostic, Emergency & Anesthetic Precautions
EDS Canada Foundation is committed to providing world renown multidisciplinary specialists that have presented on their respective areas of expertise. Information shared in theses presentations can help you and your primary care provider to form questions to ask specialists or therapists on potential diagnoses, and/or types of treatments and therapies that can help you have an improved quality of life.
Follow the Conferences > Our Client & Community Support Membership provides you access to Past Conferences links to past Continued Medical Education accredited conference videos (2014-2023)
We recommend watching the videos and taking notes on the details being discussed that resonate with you and the symptoms you may be experiencing. Oftentimes, there are symptoms that are experienced, that are not always considered as related to a HCTD.
Most importantly, please never feel alone and if you have any questions, do not hesitate to reach out by contacting us.
Four articles with precautions to lumbar punctures in patients with EDS/HSD/HCTD – Noted complications of spontaneous CSF leaks, it is not necessary for diagnostic, it should be only used as a last resort.
Tips for searching key details within long articles, to find the info on “Lumbar Puncture or LP” in the articles below, when inside the link do “control F”, to see a little box on top right, type “Lumbar Puncture” or “LP” inside that box, click return, the words will be highlighted, to go to the next, click the arrow in that box.
