May is designated as the awareness month for Ehlers Danlos Syndrome (EDS) which is a type of connective tissue disorder. Connective Tissue Disorders (CTD) are a collection of heritable genetic disorders that effect tissue such as collagen and cartilage. Connective tissue is present everywhere in the body from the skin and eyes to our blood vessels and digestive tracts. So depending upon the particular mutation you’ve inherited you may have limited issues or head to toe involvement.One CTD Ehlers Danlos Syndrome is known for its head to toe nature, though the extent and severity vary by type and person. There are six main types of EDS identified here with clickable links to a short basic summary of traits for each type. Far from all inclusive but a good primer.
CTD’s are extremely under diagnosed with hypermobility type EDS being particularly marginalized due to its mostly invisible nature and the way it affects multiple systems of the body in seemingly unrelated ways. In honor of the month and to spread awareness please feel free to use and share the following graphics. If your having trouble please right click, select “view image”, this will open to a larger window where the graphic will be displays at full size and best quality.
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The first hashtag #ZebraStrong for those affected and those who love us and know our invisible struggles. The things that we make invisible my learning to function through what can’t be treated or cured but would debilitate or at least sideline an average person because we have no choice but to do so.
The second hashtag #DontSaddleTheZebra is to raise awareness of the long brutal road of misdiagnosis most Zebras get stuck in for years to decades due to medical ignorance. The saying goes “When you hear hoof beats think horses not zebras.” which is a way of telling medical students to look for the most common issue to cause the symptoms described (horse) not something exotic (zebra). Such as if someone has a fever its probably a common cold and not Ebola.
In the case of CTD’s and EDS we are the zebra! Our symptoms get glossed over or explained away as common things often till a more catastrophic event such as (in hypermobile type) joints falling out of socket without force or cause daily or (in vascular type) an aortic rupture takes precedence. So for much of our lives we are the “hypochondriac” or “whiner” until dumb luck, persistence, or a catastrophic event pushes us to someone familiar with the condition who can identify us for what we are (zebra) and stop trying to put a (saddle) misdiagnosis on us.
So whether you yourself are affected or its for someone you care for embrace the zebra to spread awareness and help reduce the ignorance causing such suffering to all involved!