31st January is “International Day of The Zebra” and the Ehlers Danlos Society is marking the day in a big way! They’ve asked Ehlers Danlos Syndrome sufferers like me to show our zebra stripes to raise awareness of the condition.
This blog post is my way of wearing my zebra stripes and showing solidarity to my fellow zebras, who include my friend Bev and her children.
You’re probably wondering what Ehlers Danlos Syndrome (or EDS for short) is and what on Earth it has to do with zebras… well don’t worry, you aren’t alone.
Most people and many medical professionals are unaware of the condition (although it is becoming more well known) which is exactly why we need a day of the zebra… still confused? Read on!
Back in the 1940s the medical profession coined a phrase to help its students diagnose conditions that they would likely face in their careers:
“When you hear hoofbeats, think of horses, not zebras”.
In other words look for the most common answers rather than something rare, like EDS! That is why the EDS community have chosen the zebra as their mascot.
This metaphor underlines the difficulties that we face when entering a doctors surgery or hospital, where we are often faced with professionals that are only looking for common conditions causing years of confusion and misdiagnoses.
So what is EDS?
EDS affects the collagen in your body. Collagen is best described as the glue that holds everything together. It’s in all your organs, muscles, ligaments, skin and soft tissue. Normally a person’s collagen is like a flexible but tough glue, allowing your body to function normally. However for an EDS sufferer it is more like stringy chewing gum, easily stretched and unable to support the body as it should.
Having EDS effects everyday bodily functions such as walking, writing and any impact activities. It effects your digestive system, your heart and other major organs.
There are currently around 10 different types of the condition. With vascular EDS which majorly affects the heart and veins; being the most severe form.
The problems associated with EDS are endless and confusing. This wonderful organisation explain further and help with research into the condition :https://www.ehlers-danlos.com/what-is-eds/
I was first diagnosed with this condition, four years ago, when I was 35 years old, after years of unusual medical problems that left doctors scratching their heads, including:
- Fainting for no obvious reason, with my heart rate plunging into the 30s (most people would be in the emergency department with this)
- Repeatedly dislocating my hip but also partially dislocating things like my knees with no trauma or obvious reason. Every single day.
- Not responding to local anaesthetic. My body just rejects it.
- Chipping my teeth or partially dislocating my jaw after doing something minor like eating an apple or a crusty roll.
This is just a tiny snippet. It really is unusual and seemingly endless.
Once when I was 5, a simple cold made my liver swell up and I was unable to move. I was rushed into hospital and the doctors suspected meningitis, tuberculosis and all sorts but ultimately I just randomly recovered and that was the end of that…. until I got my diagnosis of EDS . 30 years later…
Sat in the rheumatologist’s office after years of failed physio therapy attempts to stop my joints popping out of place, she fine tooth combed by entire medical history and then she explained “Everything is caused by your Ehlers Danlos Syndrome. Everything”
Even my heart defect. And even that one weird time when my uterus ruptured during my third and final cesearean section.
All weird. All seemingly unrelated and yet now I was being told that they were all related and all could be easily explained by EDS.
It was a shock. And it was strange and scary. And at that time, I knew no one with the same condition as me. Trying to explain it to people they would look at me like I had three heads. There’s been many times since my diagnosis where my own doctors have to google EDS as they don’t know what it is.
Finding others that have EDS has made my knowledge grow. Groups online have taught me so much about how to manage my condition on a day to day basis. The phrase “ knowledge is power” has never meant more to me than when I realised that I could prevent jaw dislocations by changing the way I eat. That a certain cushion could support me in my sleep and prevent a partial shoulder dislocation in my sleep… it really helped. It hasn’t solved the issues completely but it’s enabled me to have a small feeling of control over something that in the past I’d never had control over before.
So when my good friend’s child was faced with years of quite serious and debilitating illnesses, all seemingly unrelated, with numerous hospital stays and ongoing tests; I saw a familiar pattern emerge.
I recognised it all. Doctors were left scratching their heads over Ava’s medical problems until they finally diagnosed her with EDS at the young age of 8, and they then started to look at her little sister Bella and my friend. They were all diagnosed shortly after. And although it saddened me, it also filled me with hope that the medical profession was finally starting to think ‘zebras’ instead of ‘horses’ when presented with a child and her family with a series of medical problems. It also made me want to be able to help my friends and fellow zebras.
To help with giving them some power over their diagnosis, and to help make sense of it all.
When the Ehlers Danlos Society produced a book for children to help them deal with EDS, I just had to tell my friend. They explained it in such a lovely way and used the zebra and it’s beautiful rare stripes to bring a sense of pride and ownership over having a unique condition to life for children.
And so today, little Ava and her family, me and my children, and many other zebras will wear our stripes today.
And we hope that seeing our stripes will make you wonder and ask why the stripes? Why the zebra?
So that we can explain and spread awareness. And maybe that one day doctors and the medical profession will think differently and help diagnose us sooner.
Thank you to Beverley Smith for allowing me to tell part of your story.