“I had a facial swelling on my bottom lip, but it started to go back into my cheeks and down into my throat. I was in a coma for five days.”
Harrington said he told emergency-room staff that he had HAE, but they didn’t know how to treat it.
“Now when we go to the emergency room, we call ahead, and they get the drugs ready.”
He is treated with a drug called Cinryze, an esterase inhibitor designed to prevent hereditary angioedema attacks.
“It’s an injection. I had a port put into my chest, and I now I self-administer the medication.
“We‘ve been lucky. The insurance companies have been great. It’s $50,000 a month for the medication, and we don’t pay a dime.”
DAUGHTER AT RISK
The Cinryze, taken twice weekly, keeps the disease under control, he said, and must be taken twice a week.
“If I forget to take it, I get excruciating stomach pain. People go through agony because they can’t afford the medication.”
Another drug he can take is Firazyr, a peptidomimetic medication consisting of 10 amino acids, which is used to treat severe attacks of HAE.
Harrington and his wife, Nicole, wed in 2008, and they have a daughter, Kati.
There’s a 50 percent chance she will develop HAE, he said.
“One thing I pray for every day is that my daughter doesn’t have it. She’ll be 3 in July, and we’ll take her to Boston for genetic testing.”
WIFE IS ADVOCATE
He said Nicole has been very supportive of him.
“She keeps me on top of things. She does research, looks up articles online. She keeps me on my toes. She’s a really good resource.”
Nicole said she sees herself as an advocate for people like her husband who have HAE.