Mom’s face swells up like a puffer fish due to rare disease

By Amy Reast via SWNS

A mom has rare condition which causes her face to swell to THREE TIMES its size - leaving her looking "like a puffer fish."

Ashley Hoskins, 36, first began to notice her lip swelling up when she was 19, but doctors chalked it up to allergies or an infection.

But over the following years, she would have repeated flare-ups on her face, as well as other parts of her body such as her hands and feet.

Her facial swelling would leave her looking "like a puffer fish" and would last days at a time, often landing the mom-of-four in hospital.

It wasn't until 2019 that she was finally diagnosed with a swelling-related condition called type III hereditary angioedema.

While Ashley jokes about her 'puffer fish' swelling, the condition has a dark side - it can be fatal if swelling occurs internally, such as in her windpipe or lungs.

She wants to raise awareness and warn others to be aware of the symptoms of the "difficult" condition.

Ashley, a stay-at-home mom, from Des Moines, Iowa, US, said: "The condition dictates my life - and stress is the trigger for my flare-ups.

"The most common places for me to swell up are my face and my feet. When my feet swell it's difficult to walk.

"When my face swells, I look like a puffer fish and people ask if I had 'bad lip filler' - once or twice I've just said yes so I didn't have to explain it.

"I try to make light of it but the disease makes everything very difficult, wherever I go I have to bring a big bag full of medical supplies in case I flare up."

Ashley began to notice swelling in her late teens - first in her face, and over time other parts of her body too.

Flare-ups would happen "once or twice a week" and Ashley would go to hospital but it took years for doctors to work out what the issue was.

Ashley - who is mom to Christian, 20, Tara, 16, Dallas, 12, and Sophia, 11 - had countless CT scans, MRI scans, x-rays and blood tests over the years before doctors finally sussed it out.

When she was finally diagnosed with type III hereditary angioedema in 2019, she learned it was due to an inhibitor protein missing from her blood, although specifics of type III are little known.

Ashley had to stop working due to the fatigue caused by her agonizing flare-ups, which could stop her from walking, talking or using her hands depending on where they were located.

She even ended up getting a hysterectomy in 2017 after a flare-up in her intestines, which caused severe stomach pain, was mistaken for endometriosis.

Ashley said: "The stomach ones are the worst, it's been compared to childbirth.

"It feels like everything in your stomach is being crushed and squeezed and twisted.

"I even passed out a couple of times from the pain. The pain would keep me up at night.

"I would constantly become sick and have to go home because of the pain, and it caused me to develop depression and anxiety too."

Ashley often feels bad if she's unable to cook for her children or to attend school events, but says her supportive husband, Dustin Hoskins, 36, is there to help.

She says facial flare-ups are one of the less painful kinds - although they take people by surprise when they see her.

Ashley said: "If people see me they ask 'do you need to go to the hospital?', people are usually very concerned if I have visible physical symptoms.

"Or people ask if I have bad lip filler, or I'll joke and say that's what makes me look like that.

"It can be hard because when I feel and look funny, it's embarrassing and I don't feel like myself when I don't recognize myself.

"But I try to make light of it. Dustin and I call it the 'puffer fish disease' and I compare my own face to pictures of a puffer fish."

Luckily Ashley has now found an IV treatment that relieves symptoms of her more severe flare-ups, although it's incredibly expensive and she isn't always able to access it on insurance.

She didn't begin experiencing symptoms until adulthood and fears her younger children may have the condition too.

She wants to raise awareness of the little-known condition so that future patients may not have to wait 11 years for a diagnosis like she did.

Ashley said: "There's no cure at the minute, especially not for type III which is the most rare.

"Because the condition mimics so many other things - such as allergies, infections, migraines and gastritis - it is difficult for doctors to pinpoint what's wrong.

"People end up getting unnecessary treatments and exploratory surgeries because people don't know what's wrong - like what happened with my hysterectomy.

"So if I can bring more awareness to light for hereditary angioedema, especially type III, I will."