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.
I am recruiting through 2021 for online Canadian participants between ages 18 to 60 diagnosed with Ehlers-Danlos Syndrome (EDS) for a Cognition study with the York University Psychology department. This research is important for understanding brain fog and cognition in EDS. We are also interested in how cognitive issues may rela
I am recruiting through 2021 for online Canadian participants between ages 18 to 60 diagnosed with Ehlers-Danlos Syndrome (EDS) for a Cognition study with the York University Psychology department. This research is important for understanding brain fog and cognition in EDS. We are also interested in how cognitive issues may relate to difficulties with pain, sleep, and autonomic function.
We would require you to complete about 40 minutes of survey (at your own pace), and 1 or 2 Zoom sessions according to participant needs. Zoom sessions will cover 1 to 2 hours of cognitive testing using some simple yet well-validated problems and questions you will largely respond to verbally in video chat.
Contact me at email@example.com to receive more detail, including our HPRC-approved Informed Consent form and some short participant intake questions.
Your participation will provide entry into a draw for $50 gift cards, and I am happy to provide your personal results and interpretation after your scoring, if interested.