I'd swell up once a week - now my life has changed

"It's changed my life. I can do everything I want to now. It's brilliant," says Jack Cope.

The 30-year-old joiner, from Bedford, has had hereditary angioedema (HAE), a condition which causes severe unpredictable swelling and painful attacks, since birth.

The swelling occurs all over his body, including in his throat, stomach and face. Even something as simple as using a hammer can cause his hand to swell.

But now, due to a trial at Addenbrooke's Hospital, in Cambridge, he is trying a new treatment which he says has massively reduced his symptoms.

"I was having about an attack a week and I've gone from that to nothing for nearly a year now," he says.

People with HAE have a defect in the gene that controls a blood protein called C1 inhibitor.

The joiner says he tried all the available treatments for his condition, with none working and therefore prompting him to try a trial.

"The attacks were varied, so the insides of my stomach can swell up, I've had my lips, my hands, my feet."

He says he made several visits to A&E during attacks, to the point he was known on a first-name basis.

Jack says his partner Chloe became his carer during the episodes.

"One night, I woke up and felt like my face and throat were swollen so I woke Chloe.

"She flicked on the light and her face just dropped because I was swollen so much.

"We were able to get to the hospital in time but if I hadn't woken up, I wouldn't be here."

Due to Jack's HAE being hereditary, other family members suffer from the condition, including his mother and grandmother.

"Years ago, when my grandma had an episode and her tongue swelled up, she was able to get to the hospital, however, when she was unpacking, she stopped breathing and her heart stopped beating.

"She was brought back with a defibrillator and spent time in intensive care on a ventilator."

The international trial has been supported by the National Institute for Health and Care Research (NIHR), with Addenbrooke's recruiting participants.

He had first infusion last year and encourages anyone living with HAE to research about trials.

"I can do things... I can plan anything in advance.

"It's changed my life."

Ruth Hudson, strategic development director at NIHR Research Delivery Network in the East of England, said: "Research would be impossible without those like Jack who volunteer, and we owe a debt of gratitude to the many people who took part over the last year."

A decision on whether the trial is successful or not will be made once the results have been published.

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