EHLERS-DANLOS SYNDROME (EDS)

[This information is correct as per the 2017 classification of Ehlers-Danlos Syndromes and related disorders].

‘IF YOU CAN’T CONNECT THE ISSUES, THINK CONNECTIVE TISSUES’

The Ehlers-Danlos Syndromes are a group of disorders affecting the connective tissue in the body. More specifically, the type of connective tissue that is faulty in people with EDS is collagen; the ‘glue’ that holds our body together.

“At the sound of hoofbeats, think horses, but remember that zebras do still exist”.

Although at present there is no cure, early diagnosis is key to preventing problems before they start, and therefore leading a normal quality of life. The hope of a discovering a cure though, which would of course be the best outcome, relies on 2 major aspects: awareness and funding.

Funding is very limited so relies on the efforts of charities to raise that money, and in terms of awareness, this is an aspect that amongst the general public and medical profession alike is fundamental, both for hope in discovering a cure, but also in helping to diagnose those who are suffering from difficult symptoms every which unbeknownst to them, are all down to EDS.

EDS is a primary condition; a condition which is the root of various others that arise as a result (also known as secondary conditions). Some examples of these include PoTS, Mast Cell Activation Disorder, Dysmotility of the Gastrointestinal tract, and Interstitial Cystitis – all of which you can find more information about in the ‘my medical conditions’ section of my blog.