Hereditary angioedema (HAE) attacks can be unpredictable and frightening. After getting my diagnosis, I thought about a time when I had my most terrifying attack of swelling, which left me panicked, overwhelmed, and feeling ill-equipped in an emergency room. It was a difficult lesson, but after my diagnosis, it became clear to me that preparing in advance for an ER trip is of utmost importance.
Day by Day
Because my job revolves around documentation, keeping track of my hereditary angioedema (HAE) attacks should be easy for me. But that’s not necessarily the case—mostly because the thought of writing down the experience doesn’t sound appealing to me. I suppose it’s because I just want to have the attack and be done with it. The last thing I want to do is relive it by writing down the experience. But since the next attack won’t necessarily be the same as the last, I’ve got to be my own best advocate and keep track of my HAE attacks.
Dear Past Self, As I look back and think about how you have dealt with your husband’s hereditary angioedema (HAE) over the past 15 years, I can’t help but feel very proud.
As a full-time working mom and a caregiver for someone living with hereditary angioedema, I am tasked with keeping track of myself, my children, and my husband, and managing our lives with my husband’s HAE. With my kids’ classes and fall sports back in full swing, I am finding myself feeling very overwhelmed. There simply aren’t enough hours in the day. If anyone were to ask me how I am these days, my response would definitely be… STRESSED!
I think that so often people living with hereditary angioedema really want to ask questions and hear information from others who have HAE. As a You, Me & HAE Mentor, I get to share my experiences of having HAE and using FIRAZYR® (icatibant injection) with people who have questions. FIRAZYR is a medicine used to treat acute attacks of HAE in adults 18 years of age and older.