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What Is EDS?

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Ehlers Danlos Syndrome or EDS is a name given to group of rare genetic conditions of the connective tissue. connective tissue is what holds our body together. Its kind of like the body's glue. There are 13 types. The most common being Hypermobile EDS or hEDS. some other rarer types include...

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  • Classical (cEDS)

  • Classical like (clEDS)

  • Cardiac Vascular (cvEDS)

  • Kyphoscoliotic (kEDS) 

  • Dermatosparaxis (dEDS)

  • Vascular  (vEDS)

  • Periodontal (pEDS)

  • Myopathic (mEDS)

  • Arthrochalassia (aEDS)

  • Spondylodysplastic (sEDS) 

  • Brittle cornea syndrome (BCS)

 

EDS makes the collagen in our body faulty causing ligaments to be very stretchy and easily damaged hypermobile joints fragile skin and veins, easy bruising, chronic pain, autonomic dysfunction, joint dislocations and more.

 

Connective tissue and collagen is in every part of the body including organs so problems can develop in every function of the body.

 

People can go 20+ years without a proper diagnosis. Many medical professionals have never heard about it or other related conditions. it took doctors 15 years to put all the pieces together to correctly diagnose Jemma. Even with the diagnosis there is very little help available for EDS patients. We are left to sort our health problems.

 

A few doctors refused to take her case on because of the EDS saying she's "Too complex" or when you mention EDS some drs believe its just hypermobility! 

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EDSers often identify as zebras because drs are taught "when you hear hoof beast think horses not zebras".

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Signs To Look Out For In Children With EDS

Classroom
  1. they may find it difficult or painful to write.
  2. Have trouble focussing on tasks. 
  3. Poor grip
  4. Poor handwriting. 
General
  1. Poor Coordination.
  2. Slow to develop, walk, talk etc..
  3. Reluctant to take part in PE.
  4. Tires easy, often dizzy, headaches, nausea. 
How to help Them.
  1. Make sure they stay hydrated/ drink enough.
  2. Allow them to rest if they need to.
  3. Speak to your GP about physio and occupational therapy.

The Zebra is the Recognised Symbol for Rare Diseases.

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