Growing up around family members with HAE, I discovered that HAE can be unpredictable, and for that reason, my family and I learned to expect the unexpected. My son had his first HAE attack in the form of a very swollen hand and arm on his 18th birthday, while my daughter didn’t experience HAE attacks until her college years.
For me, it can be helpful to be aware of how hereditary angioedema plays itself out in each of my family members. For instance, one of my daughter’s triggers seems to be stress. But I’ve found that HAE isn’t the same for everyone. That’s why I think it’s necessary to, as a family, learn what to expect from our HAE attacks and establish a routine so we know how to help—even if that just means keeping a close eye on any early warning signs or triggers. In my case, I develop a rash on my neck hours before an attack; this not only alerts me to the possibility of an HAE attack, but my loved ones as well. I’ve also noticed that, in my experience, an altered mood or slight voice changes can sometimes indicate an HAE attack coming on.
I think the important thing for us, as a family, is to take a "We're all in this together" attitude. Discussions about symptoms, triggers, duration of attacks, and how they are handled has worked for my family and provided much-needed emotional support. For this reason, it’s important for us to stay connected, regardless of geography. Two of my grandchildren with HAE are nearby; one is not. My daughter lives two states away. So I’m certainly thankful we're living in an era of text/video messages and email!
I wouldn’t choose for my family members to have HAE, but there is definitely a bond between us that not all my other family members can understand. By keeping the lines of communication open, sharing knowledge, hope, and even sometimes tears, I feel less alone on my journey with HAE.
In handling HAE in your family, what have you found helpful? Leave a comment below!
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