Undiagnosed Disease Kills Mom; Decades Later, Son’s Search Continues

Andy Long‘s mom was sick all her life. She passed away in 1969 at the age of 24.

Andy, just 5 years old, was sent to live with his paternal grandparents.

His hands would swell.

His feet would swell.

Sometimes, even his face would swell.

“These were usually brought on by a bump or a fall, and the swellings would be incredibly huge,” he says. “I was always told, ‘Oh, your mum used to get that’ but it was never explained to me properly” Andy reflects in his blog post.

[I don’t know about you, but that sounds ridiculously scary to me: Mom dies at 24, you show similar symptoms, no one can explain what they are.]

In the early ’90s, Andy was tested for ulcers, colitis, Crohn’s disease, cancer, you name it. Everything came up negative so the IBS label was slapped on him (irritable bowel syndrome).

Of course, the treatment was ineffective.

It wasn’t until a month-long hospitalization in 1994, after throwing up BLOOD, that Andy finally got his diagnosis.

Turns out Andy (and his mom, and his grandfather) has (had) HAE, or hereditary angioedema–a disease so rare it only occurs in 1 out of every 10,000-50,000 people.

HAE Swollen Hands
An example of the swelling in hereditary angioedema (HAE) patients is referred to as edema, which is caused by the lack of the C1 esterase inhibitor (C1-INH) protein.

In addition to swollen hands and feet, HAE can cause swelling within the abdomen. This can affect the intestines–basically blocking digestion. But HAE can also cause the throat to swell…and that’s what killed Andy’s mom.

Today, Andy has something his mom didn’t. Due to the several programs, groups, and outreaches to raise awareness of this dangerous and rare disease, Andy lives in a time when treatment options are available. Now his attacks can be resolved in a timely manner or, better yet, prevented. He does still get some, though.

“Back in 2008 I woke up with a sore throat. By lunchtime I was finding that I couldn’t swallow. Fortunately, I always carry treatment with me in case of an attack. That has proved to be the right thing to do!”


James Ernest Cassady

James Ernest Cassady

Though "Ernest" is a family name that's been passed down for generations, James truly earned his middle moniker when, at the age of five, he told his mother that "laughing is stupid unless EVERYBODY is happy." Since then, the serious little bastard has been on a mission to highlight the world's shortcomings (and hopefully correct them). In addition to his volunteer work at hospitals and animal shelters, James also enjoys documentaries and the work of William Faulkner. He is originally from Oklahoma.

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