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[10/19/16]  ETHAN A. HUFF-Imagine going about your normal routine and suddenly feeling your body starting to inflate, in some cases to more than double its normal size. This is what sufferers of hereditary angioedema, or HAE, experience at random, with some incidences being so severe that the condition could be life-threatening without swift and proper treatment.

Though rare, afflicting only about one in 50,000 people, HAE is extremely serious because those afflicted with it never really know when it’s going to show up and cause problems. HAE seems to lie dormant for relatively long periods of time, sufferers say, only to turn up spontaneously when they least expect it.

One of these folks is Linda Miller of Houston, Texas, who recounted to Click 2 Houston what it’s like to have an attack. The otherwise physically fit mother seems to have attacks mostly on her face, which cause her cheeks and lips to blow up like a balloon, almost like a patient who’s recently undergone lip injections of Botox.

“The windpipe can swell shut and then you can’t breathe,” Miller says about what she typically experiences. Miller also gets HAE outbreaks on other parts of her body, and she describes it as some of the worst pain a person can possibly experience.

“It’s about as big as it can get. I mean, as big as the skin can stretch, because the fluid just doesn’t stop pouring in. When it occurs in the stomach, it is so excruciatingly painful, we have to be hospitalized. It’s been described as having a child without medication.”

Cause of HAE remains unknown, though experts say it’s genetic

Many doctors don’t know what to do with their HAE patients as there isn’t currently a standardized treatment for the condition that works for everyone who suffers from it. Some patients respond positively to one type of antihistamine while others don’t, which makes it a bit of a challenge to know what to do when an HAE sufferer shows up at an emergency room.

Typically, allergy medications like Benadryl often don’t work, experts say, which is why some drug companies are investigating new treatment options that they hope will offer improved efficacy. Research doctors and others are likewise looking into new ways to help people who suffer from HAE, as the condition can be quite scary.

Dr. Paula Busse, an associate professor of medicine at Mount Sinai and allergist-immunologist who’s been treating allergy and asthma patients for many years, is currently treating some 40 patients with HAE. She told the New York Daily News (NYDN) that, while progress is being made, nobody really knows what causes HAE.

The swelling could be caused by exposure to reactive toxins, which for some people might respond positively to a natural detoxification protocol like chlorella. It could also be a factor of genetic mutation, which is mostly the direction towards which Dr. Busse leans.

“It’s autosomal dominant, which means that if a parent has HAE, there’s a 50% chance the child will have it,” she told NYDN. “For about 25% of patients, it’s a new mutation, in which case there’s usually not a family history.”

Though HAE episodes seem to appear at random, some if its known triggers include anxiety and stress, trauma, hormone replacement therapy (HRT) and pharmaceutical drugs like blood pressure medications.

“Other known triggers include surgical procedures or invasive dental work — anything that involves manipulating the mucous membrane,” says Dr. Busse, adding that many doctors who are unfamiliar with HAE misdiagnose it as a food allergy or bowel disorder, simply due to related symptoms like itching, swelling and the occasional bout of hives.