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Why EDS is more than "just loose joints"
In July 2023, Sydney Gesualdi was rear-ended at a red light. She was told by her doctors that she had whiplash and tissue damage, but instead of getting better - she got worse. Her mobility began to suffer, her motor skills disappeared, and she felt like she was forgetting how to breathe and swallow. This began her years long journey through Ontario's medical system as she tried to receive a diagnosis for Craniocervical Instability and Ehlers Danlos Syndrome. Nam Kiwanuka speaks with Sydney about her experiences of being forgotten in the medical system and her hope to receive funding from the government for a surgery she says is her right.
Research links
EDS Foundation: https://edscanada.org/
‘We live in constant fear’: the reality of life with Ehlers-Danlos syndromes: https://www.theguardian.com/society/2019/nov/05/we-live-in-constant-fear-the-reality-of-life-with-ehlers-danlos-syndromes
Billie Eilish Has Hypermobility — Here's What That Is: https://www.shape.com/billie-eilish-hypermobility-7091708
Desperate to walk again, this 25-year-old Ontario woman is ready to pay $40K for U.S. spinal assessment: https://www.cbc.ca/news/canada/london/ontario-woman-seeking-spine-care-1.7512862
Millions have the same ‘bendy body’ disease as my daughter. Why isn’t the medical profession paying more attention?: https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl
Ehlers-Danlos Syndrome: More than “just loose joints”: https://acaciahealth.ca/blog/ehlers-danlos-syndrome-more-than-just-loose-joints
The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital: https://link.springer.com/article/10.1186/s13023-021-01962-7
Got a question or comment? Email us at: [email protected]
If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health
Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.
The Government of Ontario's Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support
Follow TVO on social: https://www.youtube.com/theagenda
https://www.instagram.com/mistreatedtvo
Join our newsletter: https://www.tvo.org/newsletters
Visit the TVO Today website for current affairs journalism, documentaries and podcasts: https://www.tvo.org
See omnystudio.com/listener for privacy information.
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By TVOIn July 2023, Sydney Gesualdi was rear-ended at a red light. She was told by her doctors that she had whiplash and tissue damage, but instead of getting better - she got worse. Her mobility began to suffer, her motor skills disappeared, and she felt like she was forgetting how to breathe and swallow. This began her years long journey through Ontario's medical system as she tried to receive a diagnosis for Craniocervical Instability and Ehlers Danlos Syndrome. Nam Kiwanuka speaks with Sydney about her experiences of being forgotten in the medical system and her hope to receive funding from the government for a surgery she says is her right.
Research links
EDS Foundation: https://edscanada.org/
‘We live in constant fear’: the reality of life with Ehlers-Danlos syndromes: https://www.theguardian.com/society/2019/nov/05/we-live-in-constant-fear-the-reality-of-life-with-ehlers-danlos-syndromes
Billie Eilish Has Hypermobility — Here's What That Is: https://www.shape.com/billie-eilish-hypermobility-7091708
Desperate to walk again, this 25-year-old Ontario woman is ready to pay $40K for U.S. spinal assessment: https://www.cbc.ca/news/canada/london/ontario-woman-seeking-spine-care-1.7512862
Millions have the same ‘bendy body’ disease as my daughter. Why isn’t the medical profession paying more attention?: https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl
Ehlers-Danlos Syndrome: More than “just loose joints”: https://acaciahealth.ca/blog/ehlers-danlos-syndrome-more-than-just-loose-joints
The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital: https://link.springer.com/article/10.1186/s13023-021-01962-7
Got a question or comment? Email us at: [email protected]
If you, or someone you know, is struggling with mental health, visit any of the following resources for support: Canada.ca/mental-health
Kids Help Phone Call 1-800-668-6868 (toll-free) or text CONNECT to 686868.
The Government of Ontario's Mental Health Support Resources: https://www.ontario.ca/page/find-mental-health-support
Follow TVO on social: https://www.youtube.com/theagenda
https://www.instagram.com/mistreatedtvo
Join our newsletter: https://www.tvo.org/newsletters
Visit the TVO Today website for current affairs journalism, documentaries and podcasts: https://www.tvo.org
See omnystudio.com/listener for privacy information.