2006: “HAE is almost never suspected as a potential cause of acute pancreatitis.”
– PubMed.gov
2007: “Pancreatitis is rarely a complication of an acute HAE attack.”
– The Journal of Allergy and Clinical Immunology
2016: “This is the first report of a child in whom pancreatic disease was the presenting symptom of HAE.”
– Pediatrics
Hereditary angioedema (HAE) freakin’ sucks, okay?
In my time covering rare diseases, I’ve met a few people who live with it. Some of them have lost family members as the result of a throat swell. Others spent the majority of their lives wondering if they were crazy because doctors wouldn’t believe their symptoms. And almost all of them went years (and in some cases decades) before they were eventually diagnosed and able to get on treatment.
Highlighted in their plea is the story of a six-year-old boy who, over the course of 18 months, was in and out of the hospital with severe abdominal pain. He never showed any visual swelling. Only after a thorough analysis were doctors able to detect low levels of C1 esterase inhibitor, which ultimately led to the HAE diagnosis.
Certainly, those who live with HAE won’t find this surprising.
“Severe abdominal pain with no obvious cause” has, at one point or another, probably been written on the medical charts of every person with the condition. The noteworthy part of all this is that people are talking about HAE outside of traditional HAE circles. Before the article by Berger and Garty, how many pediatricians had heard of HAE or given it any thought since medical school?
It may not always feel like it, but HAE awareness is growing. We can only hope that leads to people getting diagnosed sooner, so they can get treatment and avoid the situations I’ve heard about from others. Now wouldn’t that be swell?
