Disability, Positivity

Ever heard of EDS?

May is EDS awareness month and if you’ve followed my blog for a while you may already know a bit about it, as I’ve talked about it in a few other posts. If you’re new you may have never heard of EDS most people haven’t. Which is why I feel it’s really important I help to spread a little bit of awareness. For EDS awareness month I’m going to share a few facts about EDS and give a little bit of background into how I was diagnosed. I’m actually going to be doing two posts this one and one about my diagnosis story.

What is EDS?

EDS stands for Ehlers-Danlos Syndrome.

The NHS defines EDS as a group of rare inherited conditions that affect connective tissue.

There are actually 13 sub-types, I have the most common type which is Hypermobile-EDS (hEDS), so I’ll be focussing mainly on this type. EDS is basically caused by a defect in collagen production, which causes it to be fragile and stretchy. Collagen is the main structural protein of connective tissue. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. So EDS, is basically a condition that effects the whole body. There is not currently a cure, treatment includes pain management and physiotherapy.

What are the Symptoms?

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Symptoms vary between types but several types share the following symptoms:

  • Increased range in joint movement (being double-jointed)
  • Stretchy Skin
  • Fragile Skin that breaks easily

Here are some of the specific symptoms of hEDS that affect me (the list is limited to just my experiences, but there are more):

  • Loose joints that dislocate easily
  • Chronic joint pain which basically could be anywhere there’s a joint: knees, elbows, hands, shoulders (you get the point)
  • Chronic fatigue, I’m basically always tired no matter how much sleep I get
  • Skin that scars and bruises easily I still have scars from childhood that were caused by just small trips.
  • Insomnia

I also have an associated condition called PoTS (postural orthostatic tachycardia syndrome), which causes an abnormally fast heart rate when changing from lying down to standing up. This can cause sickness, dizziness and blurry vision, which makes mornings a whole lot of fun.

Facts about EDS

Symptoms really vary from mild to severe. Some people may need to use wheelchairs and other mobility aids, whereas others may only experience less severe symptoms.

People with EDS often call themselves Zebras. This is because medical students are often taught “When you hear hoofbeats behind you, don’t expect to see a zebra”. This basically means look for the most common not the most surprising diagnosis. But zebras do exist, and using the zebra as a symbol is a reminder of this.

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EDS might not be all that rare, with it affecting around 1 in 5000 people, but more research is suggesting it could be more common than that as it often goes undiagnosed

People with EDS have super soft and velvety skin, which is a very small perk of having EDS but it also means it’s more fragile so there’s the downside

hEDS is inherited autosomal dominantly which means if you have hEDS there is a 50% chance of your children also having hEDS. However, the exact genetic basis of hEDS hasn’t be identified

An anonymous donor recently donated $1 million to fund genetic research in finding the genetic cause of hEDS. So thanks to that generous donor there a good chance of the genetic basis of hEDS being discovered in the not so distant future.

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I really hope this post was interesting and that you learnt a little more about EDS. If you want to read more about my diagnosis and experience with EDS, make sure to check out my next post. If you’re interested in reading more about my personal experiences with EDS check out some of my other EDS related posts linked below.

Thank you so much for reading and Happy EDS Awareness Month!

Ella xxx

Other EDS related posts:

Living With an Invisible Disability

A Letter to Someone I’ll Never Be

Want to learn more about EDS?

The Ehlers-Danlos Society Website

You can also follow the Ehlers Danlos Society on Twitter: @TheEDSociety

11 thoughts on “Ever heard of EDS?”

  1. Great post, I find it easier to read it split up like this than a chunky block on a wiki page. My friend is currently going through diagnosis of this and I had no idea what it was when she told me. Well done for raising awareness 🙂

    Liked by 1 person

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