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Endless Determination & Strength ®

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

  • Provides a confidential supportive environment to develop lasting friendships within the community
  • Unites EDSers by providing peer to peer, online, regional community support groups and social events
  • Works to cultivate change for the EDS community coast to coast
  •  Builds a network to empower individuals in the various regions across Canada
  •  Engages policy makers to affect change for the optimal quality health care for Canadians with EDS

What is Ehlers-Danlos Syndrome ?

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What Are The Ehlers-Danlos Syndromes?

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

  1. Classical EDS (cEDS)
  2. Classical-like EDS (clEDS)
  3. Cardiac-valvuar EDS (cvEDS)
  4. Vascular EDS EDS (vEDS)
  5. Hypermobile EDS (hEDS)
  6. Arthrochasia EDS (aEDS)
  7. Dermatosparaxis EDS (dEDS)
  8. Kyphoscoliotic EDS (kEDS)
  9. Brittle Cornea Syndrome (BCS)
  10. Spondylodysplastic EDS (spEDS)
  11. Musculosontractural EDS (mcEDS)
  12. Myopathic EDS (mEDS)
  13. Periodontal EDS (pEDS)


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.  


Antibiotic Alert/Medication alerts

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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