A BRAVE Thurrock teenager who has spent eight years coping with a heart condition has spoken up about her rare illness in a bid to help awareness.

Katie Davis was diagnosed with Ehlers-Danlos syndrome in June last year after five years of what her mum Charlotte simply describes as 'hell'.

The 16-year-old St Clere's student from Stanford-le-Hope first became ill in 2012, and was diagnosed with a then unknown heart condition on March 17 - the same day that Bolton Wanderers footballer Fabrice Muamba, an extremely fit 23-year-old international athlete, suffered a cardiac arrest during a televised FA Cup match against Tottenham.

The nation held its breath while medics fought for his life. Despite his heart stopping for 78 minutes he was resuscitated and has made a full recovery, though his professional playing career ended.

While the star player was the centre of the nation's attention, Katie's world caved in around her and her family as her health deteriorated.

The change the illness wreaked on her life was enormous but throughout it all the then Horndon on the Hill Primary school student showed tremendous courage, inspiring her mum to organise and run a local campaign which has seen a number of emergency defibrillators placed around the area.

Katie's courage

And the family became ardent supporters of the Royal Brompton Hospital where the bulk of her treatment took place. Only last week they were involved in another fundraiser.

Katie's courage is remarkable - and she has been honoured several times.

She won the Pride of Essex Child of Courage Award in 2016, Rachel Middleton Thurrock Civic Award in 2018, The Diana Award and was added to the Roll of Honours list in 2018.

She even got to meet Fabrice Muamba, now 32, a few years ago when she was invited to a Parliamentary Presentation to talk about fundraising with the Arrhythmia Alliance.

The footballer, now a youth coach at Rochdale, was also a speaker at the event.

"We are so proud of her. Her life has literally been hell but she has always come through, even in the darkest times she has lit up our lives," said Charlotte. "And clearly she has been such an inspiration to others. We are so proud of her."

And finally, after years of tests, Katie was diagnosed with Ehlers-Danlos Syndrome in June last year.

Now to mark EDS awareness month, which began yesterday, Katie has spoken up on social media, sharing her experience with friends, family and the world so people know what it is like to be a sufferer.

She says: "May is EDS awareness month and I thought I would share a bit about the condition.

"As well as being a heart condition, I have EDS type 3 or hEDS, a rare heart condition that affects the collagen in the body.

"It causes a variety of problems including chronic pain, chronic fatigue (which is a lot more than just being tired0, stomach problems, hypermobility spectrum disorder, blood pressure problems and a load of other lovely things.

[H2]"It's horrible"[.L]

"Basically this affects my whole body and is absolutely exhausting.

"Some days I can't walk, some days I can't get out of bed and some days I feel so sick and am in so much pain that no painkiller helps.

"It's horrible.

"Some days are better than others but on the whole I'm in pain every day.

"I don't talk about this a lot because the symptoms are so difficult to explain and it's hard to be taken seriously by some people - and even medical professionals.

"For example one of the symptoms is something called brain fog. I can't think straight, can't remember of understand simple things and lose track of what I am saying.

"It took me five years, six physios, three rheumatologists, countless doctors and a specialist to finally be diagnosed but on average it takes ten years to be diagnosed so I am lucky

"EDS is so rare that one doctor even tried telling me it didn't exist!

"The condition affects how I live every day but I wanted to share this to raise some awareness on this rare condition.

To find out more about Ehlers-Danlos Syndromes, [L]https://www.ehlers-danlos.com/may-ehlers-danlos-awareness-month/[.L] click here.[.L]