Last summer, I was sitting on my deck, reading the NY Daily News (don’t judge me; I’ve been reading it since I was six years old), and I came upon an article about a man who died in his jail cell. He had been complaining of having trouble breathing, to the point that it was getting harder and harder for him to draw a breath. He was ignored.
As I read the symptoms the man was exhibiting, it became obvious to me that the man had had a hereditary angioedema (HAE) laryngeal swell.
Unfortunately, nobody at the jail was aware of the condition; instead, they pegged him as an “attention seeker” and did nothing. It goes without saying that someone should have paid attention to his pleas for help, because the poor guy didn’t make it. He died right there on the floor of his jail cell.
This is one of the many major problems with having a rare disease.
People with HAE sometimes suffer for years with excruciating abdominal pain, swelling of the hands and feet, facial swelling, and worst of all, swelling of the throat. Swells can happen without a moment’s notice and be EXTREMELY painful—synonymous to the level of pain of labor contractions.
If you, or a member of your family suffers from “mystery swellings,” it’s worth being tested for HAE so that you can seek proper treatment. Many HAE patients report having undergone unnecessary abdominal surgery during a swell. A correct diagnosis could have prevented the majority of those cases, including the one of the middle-age man dying alone in his jail cell.
For more information, contact the US HAE Association.
