Mission:
Ehlers-Danlos Syndrome Canada provides knowledge, advocacy and support to individuals and their families living with Ehlers-Danlos Syndrome.
Vision:
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.
Award winning documentary film by Karan and Sid Sharma.
Following Mitch Martow's journey with EDS featuring other people with lived eds experience.
The documentary will be streamed FREE during the The True Colours Film Festival Dec 3rd-10th 2021
Stay tuned through fb and insta for the upcoming links to our film.
Who we are.
EDS Canada is non profit organization that
connects suffers across Canada, and advocates
for change in our communities. We
strive to be a bridge between patients and
care providers; offering informative, purposeful
medical resources for patients and the
medical community. We unite EDSers by
providing peer to peer, online, regional com
Who we are.
EDS Canada is non profit organization that
connects suffers across Canada, and advocates
for change in our communities. We
strive to be a bridge between patients and
care providers; offering informative, purposeful
medical resources for patients and the
medical community. We unite EDSers by
providing peer to peer, online, regional community
support groups, social and advocacy
events. The goal of our organization is to cultivate real change for the EDS Community. This includes engaging policy makers
to affect change for the optimal quality
healthcare for Canadians with EDS. This
work and the daily operation of EDS Canada
is staffed entirely by volunteers and is funded
exclusively by donations. We are growing and
working to become a charitable organization
Fluroquinolones(Cipro,Levaquin,Avlox,Floxin) ARE
contraindicated in EDS/ FDA/ Black Box warnings. Please view link below:
bmjopen-2015-010077 (pdf)
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