PERSONAL STORY

A Late Diagnosis
Susan's Experience in a Clinical Research Trial

My name is "Susan." I'm 38 years old, and HAE runs in my family. My father, my sister, and I all inherited the disease. However, their HAE symptoms have not been as severe as mine.

Like many HAE patients, I started to have frequent swelling when I was a child, and the attacks worsened in my teens. In fact, the HAE attacks never slowed down.

I had tried danazol and other androgen medications. But I couldn't tolerate the side effects. My voice deepened, my periods were irregular, my face broke out, and I had severe muscle pain. I also developed a condition called pseudotumor cerebri, in which the brain swells.

When I wasn't taking androgens, I had about 2 or 3 swelling attacks a month -- and each one lasted 3-4 days. Many times my throat swelled, and I was treated in the ER several times a month for many years. A few times, the doctor had to place a tube down my throat so I could breathe. I was hospitalized many times over.

Needless to say, the quality of my life was not very good. I couldn't hold a steady job during that time.

I've participated in a few clinical trials and have done wonderfully. As long as I get C1-INH infusions [an investigational medication in the United States] on a regular basis, my life is much better.

Document Published: 12/22/2006 11:45 AM
Last Updated: 1/16/2007 12:10 PM