Sometimes, we just need someone to ask us about our attacks. In honor of HAE day :-), here’s what I’d tell you if you asked me about mine.

If you asked me about my attacks, I’d be grateful you checked in. When I first started preventative medication, everyone hoped my attacks would stop completely—including me. I don’t like to let hereditary angioedema (HAE) hold me back, so I was hoping it would finally take a back seat to what’s most important in my life.

I love to stay active. I kayak, hike, and crochet. I work as a fitness instructor and a financial analyst, so I need to stay physically and mentally sharp. And I need to keep a flexible schedule, which means I need to keep attacks at bay. I like to stay open to doing anything and going anywhere—I frequently travel to visit my son and his wife in California and my daughter in Virginia!

My doctor and I were hopeful that with preventative medication, I could go a long time without having attacks. And I hope that is the case for some people, but it wasn’t for me. At first, it was hard to face the reality that attacks were still popping up during big life moments. I was disappointed and even a little depressed. Thankfully, I always travel with my on-demand medication, because I barely bounced back from an attack in time for my son’s wedding. But I did.

One day, my doctor asked me “Are you really fine? Are you still having attacks?” and we talked through how HAE was still impacting my life. Having that conversation was helpful, because it reminded me that I could still find a sense of control over my HAE by adjusting my expectations and staying prepared.

Now, If you ask me about my attacks, I’ll tell you that I do what I can to put them in the back seat:

- I carry my on-demand treatment with me. Always! Even if it’s not convenient, I know I’m prepared.

- I don’t second-guess myself: when I know it’s an attack, I treat right away.

- I find it helpful to write down how I feel day to day, or what a particular attack experience is like. That way I can get the most out of conversations with my doctor.

- I’ve built a really special support network, because I believe that community is the most important of all. My friends text me “Good morning” every day, and if I don’t answer, they’ll even come to my house to check on me.

I want people in the HAE community to know that if you’re still having attacks, you’re not alone. Talking with your support system and your doctor can help. Zero attacks may not be a realistic expectation for some of us, but we can still be grateful for improvements and stay prepared for the unpredictable.

Over time, I’ve come to terms with the fact that HAE is a part of who I am. But it’s just that—a part. I can keep showing up for life’s biggest moments, as long as I am prepared and treat as soon as I know it’s an attack.

I have my next trips to California AND Virginia planned already, and I’m on my way out for a hike with my two little dogs and my on-demand medication!

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