I learned of my husband, David’s, hereditary angioedema (HAE) diagnosis approximately sixteen years ago; however, I remember it like it was yesterday. My husband grew up knowing he had HAE due to the long-documented family history of the disease. I, on the other hand, was unaware of his diagnosis until about a year or so after we were married. There finally came a day when he felt he could no longer shelter me from his reality.
HAE can impact a person’s life in a lot of ways, but there’s education, treatment and support. The infographic below features some great information about HAE that you can share with family and friends in support of hae day :-) on May 16th.
HAE Day, celebrated annually on May 16th, can be many things. If you have the opportunity to attend an event or sponsor one yourself, whether the focus of the event is raising money for research, raising awareness in the community, or honoring the memory of a loved one lost to hereditary angioedema (HAE), we say, "Do it!" Bloggers Mike and Claudia reflect on their favorite HAE Day experiences.
Many years ago, I thought I could never self-inject an injectable medication. The thought alone seemed unbearable. How could I ever intentionally do something that I was sure would cause me pain? Then I was prescribed FIRAZYR® (icatibant injection), a medicine used to treat acute hereditary angioedema (HAE) attacks in adults 18 years of age and older that can be self-injected after training by a healthcare professional. Suddenly, I had an opportunity to learn whether or not I could handle self-injections after all.
I’m all alone. I’m weird! My doctor has told me I have this disorder with a crazy-sounding name! Nobody I know has ever even heard of it. Before I got involved in the Hereditary Angioedema Association (HAEA), that’s how I sometimes felt. But not only do some HAEA staff members have HAE, the organization brings together thousands of people who share the disease. Now, I don’t feel alone—or like I’m weird—anymore!