For the most part, in the beginning, I kept my husband’s HAE a secret from my family and our friends. We provided very limited information to those around us and continuously made excuses when my husband was unable to attend events because of an HAE attack. However, we soon learned the importance of being more open with others.
Talking with our children
Once our kids were old enough to notice the swelling caused by David’s acute HAE attacks, we decided it was very important to explain his HAE to them. We tried to only share “age appropriate” information because we never wanted to scare them. However, recognizing that children are very perceptive, we wanted to be the ones who controlled the delivery of the information. We kept it simple and to the point, stressing the fact that we need to remain understanding—understanding of the fact that HAE attacks can sometimes happen at the most inconvenient times.
It was very important to me that the kids understand that while HAE is a very serious and potentially life-threatening disease, not every HAE attack is life threatening. David most frequently has abdominal attacks, but my children are well aware that if their father has a laryngeal attack that he should always go to the closest emergency room—even if he’s used a treatment for acute HAE attacks. I try to ease their minds by telling them that not all HAE attacks can lead to that. I hope that with more information, our kids won’t see HAE as something to fear, but instead, something to simply understand. I often remind them that every family has its own challenges to deal with. Ours just happens to be HAE—and at least there are options available to treat their father’s disease.
Please note, FIRAZYR® (icatibant injection) is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older. Please see full prescribing information, including patient information.
Talking with our family and friends
When sharing information with family and friends, I have chosen to provide more of a technical explanation. I present the facts of the disease and the reality of how it affects my husband and our life together. Because we’ve learned to trust our friends with this part of our lives, we’ve been able to accept the help they freely offer. It’s nice to know I have their support and understanding.
The most important bit of information I share is this: HAE will not define us. What will define us is how we respond to HAE.
How do you talk openly with your loved ones? Leave a comment!
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