Hereditary angioedema: Bristol woman says drug trial ‘changing her life’

A woman whose body doesn’t know when to stop swelling says a drug test was “life-changing”.

Chloe Davies, 32, who lives in Bristol, has hereditary angioedema (HAE), which causes ‘spontaneous swelling attacks’.

“If my hand swelled up, it would just keep going and going. Severe attacks can leave me hospitalized and are extremely disruptive to daily life,” she said.

She took part in the trial with North Bristol NHS Trust, which reduced her attacks from one every four to six days to none in more than a year.

The condition, which affects about one in 50,000 people, can be life-threatening if swelling occurs in the throat.

There is no cure, but treatment can be given to help patients manage their condition.

Ms Davies started having symptoms as a child but did not receive a diagnosis until she was 15.

Initially, it was thought that he had an allergic reaction.

She recalls experiencing flare-ups where her hands “tripled in size” and the swelling gradually spread further up her arm.

During her childhood, she regularly suffered from stomach “rats” and bugs, which would last longer than usual.

“I remember lying on the sofa in quite severe pain, but I didn’t realize (it was AEE) at the time.

“Nobody can see what’s going on inside, so they assumed they were making a bigger fuss than everyone else,” she said.

She added that receiving a diagnosis after years of suffering was “very validating”.

There are different types of angioedema, which vary in severity.

According to the NHS, the condition causes sudden swelling and usually affects the face, hands and feet.

Sometimes the intestine can swell, leading to stomach pain.

Mrs Davies’ HAE symptoms became “much worse” after she had her daughter nine years ago.

Her monthly seizures began occurring every four days, which “dramatically” affected her life.

Each attack required treatment by intravenous injection.

“It gave me everything I needed to be able to recover, but it’s never nice to get an injection,” she said.

She added that the treatment was “delicate”, especially when she had to administer it while walking.

Eighteen months ago, Mrs Davies’ consultant – who specializes in HAE – suggested testing a new drug at Southmead Hospital.

This involves an injection into the subcutaneous fat under the skin to deliver a drug into the bloodstream.

The drug works to reduce the amount of protein produced by the liver that causes swelling.

Ms Davies was given the real drug rather than a placebo.

She noticed an “immediate” difference and has only experienced one seizure since starting treatment.

“It’s amazing – it’s changed my life,” she said.

“It helped provide a space to do what I want without worrying.

“I feel really well looked after and the research team at North Bristol NHS Trust have been really great.”

She added: “It changed my mind about doing a trial.”