When I was diagnosed with hereditary angioedema (HAE) more than 20 years ago, my loved ones worried that people would treat me differently if they knew I had a “disease.” They said I should call my HAE a “condition.” Instead, I just never really said too much at all about my HAE. But since then I’ve learned that it’s OK for me to be open about HAE.
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!
Living with hereditary angioedema can mean that trips to the hospital are sometimes unavoidable and unpredictable. Even when you have a treatment for acute HAE attacks, it’s important to remember that you still have to go to the hospital for throat attacks. When I do have to go to the ER, those trips can sometimes last for hours, and counting the ceiling tiles is only fun for a little while. So, over the years, I’ve learned how to make the most out of my time while at the hospital.
What an eventful summer! My family and I attended many cookouts and parties with family and friends, and we were fortunate to meet a lot of new people. However, there is one thing I dread about meeting new people: explaining hereditary angioedema.
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.