A woman’s hands can triple in size due to rare swelling attacks

Woman whose body doesn’t know when to stop swelling says clinical trial ‘changed her life’

Chloe Davies, 32, who lives in Bristol, suffers from hereditary angioedema (HAE), which causes “spontaneous attacks of swelling”.

“If my hand swelled, it kept swelling. Severe attacks can land me in hospital and are very disruptive to my daily life,” she said.

She took part in a clinical trial with North Bristol NHS Trust which reduced her seizures 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 disease.

Ms Davies first began experiencing symptoms as a child but was not diagnosed until she was 15.

At first, it was thought she was suffering from an allergic reaction.

She remembers experiencing flare-ups where her hands would “triple in size” and the swelling would gradually spread higher up her arm.

During her childhood, she regularly suffered from “violent” stomach aches and illnesses that lasted longer than usual.

“I remember lying on the couch and being in a lot of pain, but I didn’t realize at the time that it was HAE.

“No one can see what’s going on internally, so they assumed I was making more of a fuss than the others,” she said.

She added that receiving a diagnosis after years of suffering had been “very empowering.”

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

According to National Health ServiceThis condition causes sudden swelling and usually affects the face, hands and feet.

Sometimes the intestine may swell, causing stomach pain.

Ms Davies’ HAE symptoms became “much worse” after the birth of her daughter nine years ago.

Her monthly flare-ups began occurring every four days, which had a “dramatic” impact on her life.

Each crisis required treatment by intravenous injection.

“It gave me what I needed to be able to bounce back, but it’s never nice to get a shot,” she said.

She added that the treatment had been “tricky”, particularly when it had to be administered on the move.

Eighteen months ago, Ms Davies’ HAE consultant suggested testing a new drug at Southmead Hospital.

It involves an injection into the subcutaneous fat under the skin to deliver medication into the bloodstream.

The medicine works by decreasing the amount of a protein made 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 had one flare-up since starting treatment.

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

“It helped me have 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 opinion about how a trial is conducted.”