Ehlers-Danlos Syndrome Canada provides knowledge, advocacy and support to individuals and their families living with Ehlers-Danlos Syndrome.
Strives to be a bridge between patients and care providers; offering informative, purposeful medical resources for patients and the medical community
Many people have never heard of EDS and the name itself does not give much in the way of explanation. The Ehlers-Danlos Syndromes were named after the two physicians who first documented it in the early 20th century. However, to truly understand the meaning of the Ehlers-Danlos Syndromes, it is very important to understand the wide array of symptoms and the devastating impact on the affected individuals and their families.
EDS is a group of inherited connective tissue disorders. The collagen in the bodies of people with EDS is faulty. Collagen is the 'glue' that holds your body together and provides tensile strength to body parts like skin, joints, muscles, ligaments, blood vessels and internal organs. The faulty collagen does not provide enough strength to properly support body structures in a person with EDS. Depending on the specific type of genetic mutation, the collagen in certain body systems will be affected. Ehlers-Danlos Syndrome can range from mild to debilitating and can even be fatal.
There is no cure for EDS. Genetic disorders must be managed supportively. Current treatments involve close monitoring of cardiovascular and gastrointestinal systems, bracing, physiotherapy and great emphasise on pain management. Bodies of those with EDS are extremely fragile and can sustain injury from minor trauma. People with EDS must pay special attention to protect their bodies from injuries that could leave permanent damage.
There are currently (13) thirteen types of EDS
Due to the lack of understanding of this rare disease, many people with EDS go through years without discovering what is actually causing their medical problems and chronic pain. With awareness growing, it is now believed that EDS may be much more prevalent than previously thought.
We are looking for 100 participants with a primary diagnosis of hEDS or HSD
as well as
100 healthy participants, to take part in a
confidential research survey study. This research will be
conducted using the online survey platform, Qualtrics.
Researchers at Ryerson University are interested in learning if (and how) your pain,
hypermobility, and disability are impacted by various psychological factors, including fear of
pain, fear of falling, hypervigilance, depression, and more. They are also interested in your
feedback regarding the relevancy of these psychological factors to the EDS experience.
To participate, you must (1) be between the ages of 18-80, (2) fluent in English, (3) have a
diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder
(HSD), and (4) must not have any neurocognitive disorders (e.g., dementia), severe traumatic
brain injury, or major psychiatric illnesses (specifically the following: acute mania, psychosis,
dissociative identity disorder).
If you know of anyone without hEDS or HSD who is interested in taking part in this research,
they may also complete the survey as a healthy participant. Participation is voluntary, and you
may stop/pause the survey at any time. If you are interested in completing this 25–35-minute
online survey, please click here. Once completed, you will be entered in a draw to win one of
five $20 Amazon gift cards.
If you have any questions or concerns, please contact email@example.com.