I asked myself the same thing when I first heard its name, I can tell you!
There is actually more than one type of Ehlers Danlos Syndrome, but they all have an effect on your connective tissues. All of your connective tissue. Throughout your entire body. Your connective tissues do a pretty important job – think of them like the syrup in flapjacks.
It’s their job to hold everything that makes up your body together, providing support in your –
- joints (so tendons, ligaments, etc)
- blood vessels
- internal organs
- and even your bones.
Or returning to my flapjack analogy: your butter, sugar, oats and er… Fruity bits!
If you have EDS, a mutation in your genes causes a particular type of connective tissue to be faulty. Exactly how that fault manifests, and which parts of your connective tissues it affects, will depend on the type of EDS you have. For many of us it is to do with a form of collagen. Despite this, in the most common form of EDS the gene mutation still has yet to be identified.
You can read more about the different types of EDS and their diagnostic criteria on the Ehlers Danlos Society’s website.
What does any of this have to do with zebras?
It was an originally an American medical slang term, but now it is known and used in medical circles across the globe. It came from a phrase coined by Dr. Theodore Woodward, of the University at Maryland School of Medicine, in the late 1940s. He would tell his students “When you hear hoofbeats, think of horses not zebras” – because horses are more common in the USA and probably the cause of the sound. Due to human psychology, less-experienced medical personnel can fall into suspecting rare diseases when a more common condition is more likely.
Dr. Woodward’s saying is intended to keep minds on the most logical path when considering clinical evidence. For genuine medical zebras however, the affect of this advice combined with other factors can often result in people receiving incorrect diagnoses. In some cases, it can even mean the denial of recognition of any problem being present. It takes an average of ten years for someone with EDS to get the correct diagnosis.
That’s a long time to earn your stripes.
Charities, awareness movements and many individuals with EDS have adopted the zebra as their mascot – yours truly included of course! Not only does it represent the rarity as outlined above, but it also helps to illustrate one of the key points to remember about those with the condition: No two zebras are the same – we all have different stripes. This doesn’t just refer to the 13 types of EDS, but that even people with the same diagnosis can find it has a very different impact on their lives. It varies considerably from person to person, even in the same type of EDS and within the same family. For some, the condition can be relatively asymptomatic – even appearing to offer certain benefits with regards to things like increased flexibility and smooth skin. For others, their symptoms can be disabling and have a huge negative bearing on their quality of life. Some of the rarer and more severe types can even be life-threatening.
It is still by many accounts an invisible illness, but us all being different is represented here as well. My EDS has progressed to the point that I use a wheelchair the majority of the time, making it quite apparent to those I encounter. In spite of this I still hide my disability in many ways, for reasons I don’t yet understand. But that’s a blog post for another day. For now, I hope I’ve helped your EDS related knowledge progress from Zebr..Uh? to Zebra!