Home > Uncategorized > Ehlers Danlos Syndrome Awareness Month

Ehlers Danlos Syndrome Awareness Month

Otherwise known as EDS, Ehlers Danlos Syndrome is a condition that I hadn’t even heard of until I made some excellent friends on the Twitters. One of those friends has written something that I would like to share with you, and hope that you will share with others.

Ehlers Danlos Syndrome Awareness month!

Have you heard of EDS? I hadn’t until I was diagnosed.
All my life since I was born, I’ve had health problems that were seemingly unconnected. I have hearing problems, bowel and stomach problems, breathing problems, joint and muscle problems, fatigue and pain problems etc and etc. When I was old enough to start questioning it, no one seem to have an answer. Doctors didn’t know, my parents didn’t know.

It began to have an impact on my school work. I was often too exhausted and found it difficult to concentrate. Despite trying to tell teachers, they weren’t very helpful. I was dislocating joints and was in pain everyday. No one had an answer. I was advised not to do P.E by my hospital.

Then as I got older and started work, it got harder and harder. The symptoms worsened and I struggled to even stand. I would often ask to sit down. I would spend a ridiculous amount of time being sick and being in the toilets. I was dizzy and felt I couldn’t breathe. Sometimes I would pass out.

Eventually employers had enough. I would be sacked, one after the other. They could do it because I had nothing to prove that I was ill.

Then in 2012, I could no longer walk properly. I couldn’t climb stairs. Every step hurt. I was referred to Rheumatology and was diagnosed with Ehlers Danlos Syndrome.

The doctor told me that I was born with faulty collagen, the stuff that is used as a structure to build you with. It’s like a house with faulty material, it’s never going to stay upright together unless you use the proper materials. Without the proper collagen, your body doesn’t function quite like everyone else’s despite looking the same.

It was a huge relief to me, to find out after 25 years that I finally have an answer.

No I can’t be cured. Yes, I’ll be ill and disabled for the rest of my life. But I’m okay with that. I have wonderful friends and family.

Hope this helps!

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