Ehlers-Danlos syndromes: Current landscape and hopes for future directions

Feb 28, 2021 · 55m 17s
Ehlers-Danlos syndromes: Current landscape and hopes for future directions
Description

Ehlers-Danlos syndromes (EDS) are thirteen subtypes of rare connective tissue disorders characterized by numerous debilitating symptoms, including chronic pain. Sadly, current gaps in dedicated health care and research for EDS...

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Ehlers-Danlos syndromes (EDS) are thirteen subtypes of rare connective tissue disorders characterized by numerous debilitating symptoms, including chronic pain. Sadly, current gaps in dedicated health care and research for EDS leave many Canadians living with these chronic illnesses undiagnosed or undertreated.

On this month’s episode of the Pain Waves podcast, we’re joined by three guests to learn more about these chronic illnesses. Dr. Nimish Mittal tells us about what Ehlers-Danlos syndromes are, the current gaps in health care and research, and what changes need to be made in the Canadian health care system to better support people living with EDS. We’re also joined by Kathleen Eubanks from EDS Canada, who shares her firsthand experience of living with the illness, and Sandy Smeenk from the ILC Foundation, who shares her professional and personal experiences as a mother to a child with EDS.

Resources mentioned in this episode:
- EDS Society: https://www.ehlers-danlos.com/
- EDS Canada: https://ehlers-danlossyndromecanada.org/
- The ILC Foundation: https://www.theilcfoundation.org/
- GoodHope EDS Clinic: https://www.uhn.ca/MCC/Clinics/Ehlers-Danlos_Syndrome_Clinic
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Author Pain Waves by Pain BC
Organization Pain Waves by Pain BC
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