When I first got my diagnosis, I felt relieved to finally have a name for my condition. But in between the relief was a whole lot of confusion. How could my condition be hereditary when I was the only one in my family with attacks?
My head was spinning, and I felt a wave of uncertainty and concern for my family members—especially my brother.
Luckily, my doctor was there to answer all my questions about managing my HAE, and my family and I were able to come up with a plan for understanding how HAE fits into our lives.
- Step One: Learning the basics of HAE. According to published HAE resources, HAE is defined as hereditary because the genetic defect is passed down through families. If one parent has HAE, there is a 50/50 chance that HAE will be passed to a child.
But this doesn’t mean all patients diagnosed with HAE come from parents with the illness! About 25% of people with HAE have no family history at all. These cases result from a genetic change that happens spontaneously. Once the spontaneous change happens, it can be passed on to children.
- Step Two: Getting tested. With encouragement from my doctor, my parents decided to sign up for the same blood test that I took. It would allow us to know for sure if I inherited HAE from one of my parents. Luckily, both tests came back negative, and my brother has been showed to be negative for HAE as well.
I am so grateful my family is active, happy, and HAE-free. Yet, at times, it can be tough to be the only one with this disease.
I just have to remember that even though I’m the only one diagnosed with HAE in my family, I am not alone. My HAE is a family matter! My family has been by my side through attacks and treatments, and it has been a journey for all of us.
I believe we should help our loved ones understand HAE. How do you go about doing that as the only one diagnosed with HAE in your family? Leave a comment!
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