I was diagnosed with Classical Ehlers Danlos Syndrome (EDS) at the age of 38. My then-12 year old daughter was diagnosed with EDS soon after.

The month of May is our turn to have one of those ‘Awareness Months’ and I want to make a positive contribution towards that.

So what is EDS and what am I going to be doing?

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.

Connective tissues are tissues that connect, support and bind skin, tendons, ligaments, blood vessels, internal organs and bones.

There are 13 types of EDS, all of which are caused by faults in certain genes that make connective tissue weaker.

The condition is life affecting but to varying degrees of severity. For some, it can be disabling, for others it can be life threatening.

EDS Support UK is a charity dedicated to raising awareness of the condition and supporting those affected.

Every year, the charity hosts a ‘Dazzle Walk’ for people to raise money to enable them to continue with their cause.

I have never taken part in this.

The only thing that dazzles when I walk is the metal on my walking stick so trying to walk it would not be a sensible plan.

The organisers are aware that walking will be an issue for many people with EDS so invite everyone to do the walk on their own terms.

So I have taken the initiative….

I might not be able to walk it but I can swim it. I swim as part of my pain management plan. I move in water in a way I simply can’t on land.

Swimming makes me feel good. It makes me feel free, it makes me feel empowered, it boosts my self esteem and it eases pain.

So welcome to my Dazzle Dip!

38KM over the course of May. 1KM to represent every year that passed until I finally got the answers I needed.

Anything you can give to support me in reaching my goal would be sincerely appreciated!

Thanks for taking the time to read this and an even bigger thanks if you help me.

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