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Sudbury woman's life turned upside down by rare heart condition



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A young woman has told how her life has been turned upside down by a rare heart disorder.

Ellie Coleman, 23, from Sudbury, suffers from condition which means that any exercise, stress, anxiety - or even chocolate - can send her heart racing.

The problem led to her collapsing more than 17 times in two months while she worked as an assistant manager at a gaming cafe.

Ellie Coleman, 23, says she wouldn't have got through the last few months without the support of her family and her boss. Picture by Mecha Morton
Ellie Coleman, 23, says she wouldn't have got through the last few months without the support of her family and her boss. Picture by Mecha Morton

Often, during an attack, she would stop breathing.

“The last few months have been scary and I couldn’t have got through without the support of my family and my boss at work,” said Ellie.

“The condition means that my heart would race between between two and four times a day and reach such high levels that I would collapse, often going unconscious.

"The attacks lasted anywhere between a few minutes and 15 minutes. The longest was five hours.”

Ellie with her boss Will Ward who raised fund for a defibrillator.
Ellie with her boss Will Ward who raised fund for a defibrillator.

Doctors have discovered Ellie has a blockage to her heart and also suffers from two kinds of arrhythmias, which cause abnormal heart rates.

The usual resting heart rate is 80-90 beats per minute, whereas as Ellie’s is around 130, and can reach as high as 190.

“I first had problems when I was 12 with something called SVT, which is an abnormally racing heart,” said Ellie.

“I had an operation which held this at bay, until now.

"This year I have been seen by specialists at West Suffolk Hospital, Addenbrooke’s Hospital and I am under the care of Royal Papworth, where they are monitoring what is going on.

"I am on medication to control my heart rate but I virtually housebound and mostly use a wheelchair because exercise can trigger my condition.

"I have also had to cut out things like caffeine and chocolate as they can set my heart racing, too.

"The doctors have called my condition an enigma because it is so complex and rare, especially in someone so young.”

Ellie worked at the Caffeine Lounge in Sudbury when her troubles began in June.

Owner, Will Ward, launched a fundraising drive for a defibrillator, which Ellie can carry around with her, in case she stops breathing.

“Unfortunately, we had to close the cafe down in September after hardly being able to open due to Covid restrictions,” said Will.

“But we kept the fund going and managed to raise £1,800. Thanks to everyone who contributed.

"It was frightening when Ellie collapsed at work. I am a first aider and my colleague, Conor, a first responder, and we were able to look after her as best as we could.

"Sometimes she would have no pulse and her heart would literally stop. But thankfully, each time, she would come back.

"We are just hoping doctors can find a way forward for her.”

Ellie has also found support though a group called One Beat, for young people aged between 18 and 30 living with a heart condition, and run by the British Heart Foundation.

"They have been great," added Ellie.

"Through them I have been able to talk to other young people which has been a great comfort."

Will Ward meanwhile is also looking for opportunities to develop an app which can warn users when their heart beat is abnormal or reaching critical levels, inspired by Ellie.

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