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Ehlers-Danlos Syndrome is a group of genetic connective tissue disorders that affects the whole body, often with disabling symptoms.

When she was a child, I saw my daughter Liz tie her limbs into all sorts of positions I didn’t think possible. Quite sweet in a child, but we were unaware of the future consequences. A superb dancer in her teenage years, taking part in the Cats Masterclass, she was soon suffering symptoms of hEDS. Now approaching 40 she describes how the condition affects her:

‘Living with EDS is a daily challenge, with every morning a lottery as to how the symptoms will present themselves. I have days where I feel good, my body capable of many tasks, and days where even the basic acts of getting out of bed, getting dressed etc., take it out of me. I would love to know a day without pain but instead spend even my good day at a pain level that would have most people unable to function normally. On the bad pain days though, I still have to push through as there isn’t the support, understanding or awareness the condition to allow me the reprieve I need to let my body rest when it needs to. EDS UK is crucial to raising awareness of this debilitating condition and supporting those of us who live with it daily.’

Her 9 year old daughter Annabelle hopefully has better chances due to Liz’s knowledge of the condition. Annabelle frequently starts pulling her feet up into unnatural positions and Liz is quick to control what she is doing.

There are 13 types of Ehlers-Danlos Syndrome but by far the most common type is Hypermobile EDS. Symptoms can include:

• Joint hypermobility

• Loose, unstable joints that dislocate easily

• Joint pain

• Extreme tiredness

• Skin that bruises easily

• Digestive problems such as heartburn and constipation

• Dizziness and increased heart rate after standing up.

• Problems with internal organs

• Problems with bladder control

A lack of training in the medical profession, combined with GP’s having only 10 minutes with each patient to try and diagnose this complex, multi system condition results in an average 11 year wait for diagnosis.

A few years ago, the only specialist NHS hEDS centre in England was closed due to lack of funding.

Last year, Ehlers-Danlos Support UK petitioned the Government for dedicated NHS services. The response was ‘There are no plans for a national service for diagnosis or treatment of hEDS and HSD’.

EDS is estimated to affect about one in 5,000 people globally, which means that 13,600 people in the UK suffer from the condition. However, this number is thought to be an underestimation.

The lack of diagnosis and treatment inevitably masks how common the condition is and sufferers are reliant on this charity for help and support.

So this 69 year old marathon runner, with a career ending knee injury, will be taking part in the Age Group Marathon World Championship (with medical support) in Sydney on 15th September to raise money for Ehlers-Danlos Support UK.

Please help this charity to fill the void to help and support sufferers left in limbo by a system which currently fails to recognise its responsibility.