An Iowa mom's rare condition causes her face to swell to three times its size , leaving her looking "like a puffer fish".
36-year-old Ashley Hoskins first began to notice her lips swelling up when she was 19, but doctors brushed it off as allergies or an infection. But over the course of the following years, she suffered repeated flare ups on her face, as well as other body parts such as her hands and feet.
Her facial swelling would leave her looking "like a puffer fish" and last days at a time, often leaving the mom-of-four hospitalized. In 2019, though, she finally got some answers and learned she had a rare condition .
READ MORE: New 'lethal' mpox variant crosses borders threatening hundreds of thousands with severe risk
READ MORE: Woman finds freak object inside her abdomen and horror hits when she starts pulling on it
She was diagnosed with a swelling-related condition called type III hereditary angioedema. Ashley makes light-hearted jokes about her "puffer fish" facial swelling, but her condition has a dark side.
If the swelling occurs internally, such as in her windpipe or lungs, the condition can be fatal. Now, Ashley wants to raise awareness and warn others to be aware of the "difficult" condition's symptoms
The stay-at-home mom from Des Moines 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 don'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 first noticed the swelling in her late teens, at first in her face, and over time other parts of her body too. Flare ups happened "once or twice a week" and Ashley would go to hospital, but it took doctors years to work out what the issue was.
Ashley, 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 got to the bottom of what was causing her swelling. 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 the specifics of type III are little known.
Ashley had to stop working due to the fatigue caused by her flare ups, which could stop her walking, talking, or using her hands, depending on where the flare up was located. She even ended up getting a hysterectomy in 2017 after a flare up in her intestines, which caused severe stomach pain that was mistaken for endometriosis.
"The stomach ones are the worst, it's been compared to childbirth," explained Ashley. "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 unable to cook for her children or attend school events, but she says her supportive husband, Dustin Hoskins, 36, is there to help. She said facial flare ups are one of the less painful types - although they take people by surprise when they see her.
"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," she said. "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."
Thankfully, 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 she was in her late teens, and on her way to adulthood, so 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 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."
Most Popular
Comments / 0