Mysterious genetic disease that causes sufferers to swell to double their size at random - but doctors have no idea why

  • Hereditary angioedema is a condition that deprives the blood of protein
  • The illness is a genetic disorder, causes patients to swell up at random
  • Doctors are still baffled by the link between patients' blood and swelling
  • Only now are drug firms starting to develop instant relief pills that work 

By Mia De Graaf For Dailymail.com

Published: 11:43 EST, 11 October 2016 | Updated: 14:07 EST, 11 October 2016

A rare genetic disorder causes sufferers to swell as if they are having an allergic reaction - but it happens at random. 

Hereditary angioedema (or HAE) is a condition that deprives the blood of protein. 

For some reason, this leads sufferers to have spontaneous attacks of swelling that could stop them from breathing. 

And drug manufacturers are only just beginning to develop a kind of antihistamine that may be able to provide instant relief.

One sufferer, Linda Miller of Houston, Texas, described her condition to Click 2 Houston.  

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Linda Miller, who has HAE, pictured without a reaction
During a reaction
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Linda Miller, who has HAE, pictured (left) without a reaction, and (right) during a reaction

Normally a slender and physically fit mother, Miller has regular attacks that cause her entire face to fill with fluid.

But she says she never knows when to expect an attack.

'The windpipe can swell shut and then you can't breathe,' Miller explained.

'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. 

'It's been described as having a tooth pulled without any deadening. It's really the worst pain I've ever, ever suffered.'

Around one in 50,000 Americans have the disease, according to federal data

Around one in 50,000 Americans have the disease, according to federal data

It can affect patients differently - some all over the body, some in the face, some in the stomach, some in the hands and feet

It can affect patients differently - some all over the body, some in the face, some in the stomach, some in the hands and feet

Normal allergy-fighting medication does very little to abate the symptoms

Normal allergy-fighting medication does very little to abate the symptoms

HAE is incredibly rare. 

Around one in 50,000 Americans have the disease, according to federal data. 

It can affect patients differently - some all over the body, some in the face, some in the stomach, some in the hands and feet. 

And normal allergy-fighting medication does very little to abate the symptoms.  

'We can show up to the emergency room with the same symptoms and we get the same medication, and it doesn't touch us,' Miller told Click 2. 

'I mean, it doesn't make a bit of difference.'

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