As the name implies, hereditary angioedema (HAE) usually "runs in families." Sometimes, there are multiple members diagnosed with HAE, like in my case. Three generations of my family have suffered from HAE attacks—so much so that we became “the family with that strange swelling disease.” I believe our situation has raised challenges, but it has also provided a certain amount of comfort.
HAE and Family
My “HAE Family” is very diverse, as it consists of fellow caregivers, people with HAE, physicians, and patient advocates—all from whom I’ve received support. Hereditary angioedema (HAE) isn’t something I want my husband to have, but I’m lucky to have had the opportunity to know so many people who understand my journey as a caregiver.
The “hereditary” in hereditary angioedema, can create some soul-searching moments when it comes to family planning.
One of the hardest things for me has been dealing with denial about my hereditary angioedema (HAE). Denial is an easy path to run on, but with it comes loneliness and regret. Regret that, because I was in denial about my HAE and wanted to hide my symptoms, I missed holidays, work, special dates, and gatherings with friends and family.
Learning to ask for help has been a difficult journey for me. I am a strong person, but sometimes I can be prideful and stubborn to a fault. But coping with HAE can be difficult for both patients and caregivers. By shutting out those I love, I’ve realized that doesn’t help them help me. Now, I ask for support from my loved ones, because I believe they want to help me.