People with Loeys-Dietz syndrome may experience pain throughout the body. Pain can be chronic (lasting more than three or four months) and negatively impact quality of life.
To help decrease pain, we recommend:
- Reading about Loeys-Dietz syndrome and pain management strategies, chronic pain, and the impact of cold weather – read about pain here.
- Consulting this page’s information on pain resources, pain clinics, and pain clinic directories
- Resources for Canadians living with pain during COVID-19 from the Government of Canada.
- The Pain Waves is a podcast from Pain BC. The podcast shares information from people living with pain and from experts studying chronic pain.
- My Care Path is a free online informative tool from Pain BC. It provides chronic pain information and tools to teenagers aged 12 to 17.
- Live Plan Be is a free online self-management tool from Pain BC.
- Coaching for Health is a free telephone coaching program from Pain BC. Coaching can help people living with pain to build self-management skills and improve their quality of life.
- Pain Support Line from Pain BC. The support line provides information and support to people living with pain, their friends, and their family.
- The LDS Helpline at 1-888-LDS-FCAN. Through the helpline, the Loeys-Dietz Syndrome Foundation Canada provides peer support and resources.
- Pain Management Support Group from the Marfan Foundation. This group is for people with connective tissue disorders and meets virtually on the 4th Thursday of every month at 7:00 PM EST. The support group is held in English.
- Support Groups in British Columbia from Pain BC. There are multiple support groups for people living in different parts of British Columbia. The support groups are held in English.
These clinics are familiar with connective tissue disorders like Loeys-Dietz syndrome.
Find a clinic in:
Chronic Pain Management Program at Primary Care Network Calgary Foothills
- Throughout Calgary, AB
- Phone: 1-855-792-3726
- 5655 Cambie Street, (Basement Level), Vancouver, BC, V5Z 3A4
- Phone: 604-566-9101
- Fax: 604-566-9102
- Email: firstname.lastname@example.org
Dr. Jesse Ennis at Shoreline Medical Brentwood Bay
- Dr. Jesse Ennis is a physiatrist with a special interest in pain management and treating people with connective tissue disorders.
- 102 – 7143 West Saanich Rd., Brentwood Bay, BC, V8M 1P7
- Phone: 250-652-9191
- Fax: 250-294-7799
- 209 – 6411 Nelson Avenue, Burnaby, BC, V5H 4H3
- Phone: 1-855-236-8746
- Fax: 778-379-9325
- Email: email@example.com
Edwards Family Interdisciplinary Centre for Complex Pain at the Montreal Children’s Hospital
- Room A 02.2227, 1001 Decarie Blvd., Montreal, QC, H4A 3J1
- Phone: 514-412-4448
- Fax: 514- 412-4341
Pain Clinic Directories
These clinics may or may not be familiar with connective tissue disorders.
Find a clinic in:
- British Columbia (directory provided by Pain BC)
- Canada (directory provided by the ILC Charitable Foundation)
- Ontario (directory provided by the Government of Ontario)
- Quebec (directory provided by the Quebec Association of Chronic Pain)
- Saskatchewan (directory provided by the Saskatchewan Pain Society)