Mum has rare disease causing her face to swell "like a puffer fish"

  • 2 months ago
A mum 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 mum-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 mum, 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 mum 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 agonising flare ups, which could stop her 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."

Category

😹
Fun
Transcript
00:00My face is swelling right here. I'm in Ankeny, so I'm like 50 minutes away from home, and I forgot my meds.
00:13And we have to wait for this appointment, so I'm just hoping it doesn't get too bad.
00:19I think it's a little more swollen now. Just a little.

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