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.
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!”
