Health | What is Ehlers-Danlos syndrome?

Health | What is Ehlers-Danlos syndrome?

I am a zebra!

Medical students are taught that “When you hear hoofbeats, think horses, not zebras.” Basically, don’t expect a rare illness when it’s likely a more common one.

The problem is, sometimes it is a zebra.

Sometimes that person does have a rare condition. A medical zebra is a person with a rare medical condition.

“You don’t look sick.”

If you were to pass me in the street you wouldn’t think there’s anything wrong with me. I don’t look like I’m sick or suffering, that doesn’t mean I’m OK though.

I have a rare condition called Ehlers-Danlos syndrome (EDS). More specifically, I have hEDS, hypermobile Ehlers-Danlos syndrome.

At this time there is no cure, but most of the symptoms are treatable.
For accurate and detailed descriptions of the various types of EDS please look here or here. This post is just to share with you how I live with hEDS.

How does it affect me?

The condition is caused by flawed genes leading to faulty collagen and weaker connective tissues. Which support everything from skin and blood vessels to organs and bones, they give the body strength and elasticity.

I have hypermobile joints. My knees and elbows extend further than usual, and I’m often in pain. My skin is fragile, it breaks or bruises easily, and is very slow to heal.

My worst symptoms are musculoskeletal pain and extreme fatigue, which is why I can only work part-time. If I do too much physical work I get so exhausted that I can’t function properly.

That being said, I thank my lucky stars I don’t have worse symptoms, like problems with digestion, internal organs or bladder control. Many EDSers suffer from these, and frequent dislocations too.

Living with EDS

While it’s important to listen to my body and know what my limitations are, I don’t want to stop doing things. I’m afraid that if I start cutting out things because they cause me discomfort I wouldn’t have anything left to do, and I’d start losing what abilities I currently have. So I just do what I can, and reduce when necessary.

One of the hardest things about having EDS is trying to live a “normal” life.

I’m just a zebra trying to blend in with the horses.

I hope you now feel like you know me a bit better, and maybe learned something about invisible illnesses.

Do any of you have a rare or invisible illness? Let me know in the comments!

Elimy  x

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