'It's changed my life': Essex woman left in pain for years hails 'game-changer' clinical trial

Sian Harding explains to ITV News Anglia's Callum Fairhurst about the impact on her life.


A woman who suffered years of pain because of a life-threatening genetic disorder says a new clinical trial has "changed my life".

Sian Harding, from Benfleet in Essex was born with a rare debilitating condition called hereditary angioedema (HAE) which causes swelling from head to toe, including in her stomach.

Her hands and feet would more than treble in size - and become painful to touch - and the condition can even restrict a person's airway, which can prove fatal.

But inclusion on a trial at Addenbrooke's Hospital in Cambridge - one of only three in the country - has been "a total game-changer", she said.

“It is just like someone's ripping your insides out and just twisting your insides is the only way I can explain it, which is making them vomit," Ms Harding said.

"I would just consistently vomit. You don't realise how much it impacts your life.”

For years Sian, on the right, with her mum Ann, struggled to even walk because of the pain from swelling Credit: ITV News Anglia

The 33-year-old has taken injections every two days to try to control some of her symptoms before being given the chance to take part in the gene therapy trial.

Ms Harding underwent a single infusion of a therapy, which reduces the levels of total plasma called kallikrein that makes her blood vessels leaky, effectively stopping the swelling attacks.

"I haven't been ill, I've had no symptoms, no nothing. It has been amazing; it's absolutely changed my life," Ms Harding.

“Since the day I had that infusion last November, until now, I haven't injected. I haven't been ill. I've had no symptoms.

“It is a game-changer for anybody that's ill. A total game-changer. It would change your life. It's amazing. Absolutely amazing."

Her mother Ann Harding, who helped set up a charity HAE UK to support those with the condition cannot believe her daughter's recovery.

“Although I'm still involved with the charity and I intend to help everybody else, the burden for me is gone," she said.

"If someone has said to me five years ago that she'd be cured, I’d have laughed.”

Ms Harding will spend the next 15 years being monitored as part of the trial.

Cambridge consultant Dr Padmalal Gurugama said he was delighted for her.

"The results from phase two convincingly build on those from phase one, and offer real hope to patients suffering from a condition that until now had very few treatment options," he said.

"It is absolutely vital for patients, and those clinicians who care for them, that this game-changing work continues."


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