HAE patient
stories

For me, with my HAE, I remember having to constantly reinvent ways just to get through the day. In my job at a furniture store, I would get such bad swells—they were really painful! There was this one time I was helping a lady move her couch and got a swell in my hand. But I took my acute medication and just tried using my knee or another part of my arm because this lady needed her furniture!

It seemed like every week I was spending way too much time either dealing with an attack or thinking about when the next one would be. I’m a grin-and-bear-it kind of guy, but it was the sheer unpredictability of HAE that wore me down.

I spoke with my doctor and realized that I just wasn’t managing my HAE as well as I could be. My doctor and I worked as a team to really find a management plan that worked for me. This allowed me to get on my current acute and preventive therapy, and to live my life with fewer attacks in the long term. I realized that dismissing one attack or two hand swells just wasn’t worth it.

If you ever feel like you’re just pushing through HAE attacks, don’t wait like I did. Talk to your doctor about your HAE management plan. It’s OK to ask for help.

I love my job! I still get to use my hands, which is great. I got promoted to manager, working on the floor, so that’s been really exciting. And a bit more manageable too. I get to talk with people every day and help them find that perfect piece of furniture for their home. It makes me feel like I’m having this period of joy and success. And that’s the kind of positive thinking I want in my life.

If you’re a parent, then you know…we always worry about our kids. No matter what. And when HAE is in the picture, you have a whole other set of worries on your hands. With both myself and my son, Andrew, having HAE—well, honestly, worrying about it seemed to consume my thoughts.

I remember on Andrew’s first day of soccer, I kept thinking, will he get an abdominal attack and have to sit out? Will he be embarrassed? And as a mom, these questions were a really big deal to me. I needed to know how his HAE would affect him in those situations.

All of these thoughts made me realize his HAE was not being managed as best it could. My husband and I know HAE is a lifelong condition, so that really motivated us to get him on a management plan that was right for him as soon as possible. And thankfully our doctor agreed. The relationship we have with our doctor has been instrumental. And Andrew has grown up knowing that how he manages his HAE is very important.

When it comes to raising a family, I like to think about all the regular stuff like, Is he getting good grades? What does he want to do when he graduates? When will I meet his girlfriend? I love that he’s enjoying college and playing college sports. Being at his games is so much fun! He’s learning and growing, and I’m just so proud. That’s what I want to always have on my mind.

As a chef, you have a lot of things on your mind, all the time. Was the meat cooked to perfection? Do we have enough of the specials left? Are the customers happy? But for me, with my HAE, my thoughts were a little different.

I remember this one time we had a huge party we needed to impress and the whole time I’m wondering, what if I get a really bad [hand] swell? It’s not like I could leave—I needed to keep this job. The restaurant business can be stressful enough as it is, but here I was constantly thinking about HAE on top of everything else.

All of these thoughts made me realize I was not managing my HAE as well as I could be. Talking to my doctor about a management plan really helped me. We worked closely together to explore treatment options that may help to reduce the frequency and severity of my attacks. And we discussed everything—the benefits, the risks, how I could work a treatment into my schedule. And it gave me confidence knowing we had a plan in place.

My doctor and I are definitely happy with how I'm currently managing my HAE. And if you’re not happy, make sure you talk to your doctor too. Getting on a management plan that’s right for you could really make a difference.

The best part about being a chef is getting to be creative. I get to think about how to make a dish interesting. Or come up with an impressive menu to really wow the customers. It’s challenging but in the best way possible. My creative thinking has allowed me to be successful in my career and ultimately provide for my family. Which means the world to me. Those are the things I want to have on my mind all day, every day.

Many people make their way through school just fine, but high school was not easy for me because of my HAE. I couldn’t focus in class. It would take forever to get the work done. I found I was often thinking about when the next attack or swell was coming. And that continued after school. HAE affected my social life, my career, and my family—including my relationship with my son.

I kept thinking, wow, when you have HAE, it can be hard gaining momentum in your life. The reality is there are just too many interruptions. Whether I had a week or a month in between attacks—wondering when the next HAE attack would happen was always on my mind.

My doctor and I never gave up hope that we’d find something that would work for me. And that’s why you shouldn’t give up either—always keep pushing for a management plan that’s right for you. It’s worth it.

I find myself thinking just how grateful I am that I’ve been able to move forward in my life in a positive way. I have a steady job that I love. I feel like I can be more present as a father with my son. And just provide for my family, like I always wanted to do. That’s what I want to be thinking about every day.

Our family get-togethers were always so much fun. The people, the food, the music. But I remember always being worried about my HAE and if it would keep me from enjoying them.

We were getting ready to go to this one family reunion. And I was so excited because my mom was making pork and chili sauce, which I love. But I kept thinking, will I get another horrible face swell and have to go to the ER? What if I miss out on all the fun and seeing everyone? It was awful having all those worries about my HAE. I just never knew when it would show up.

I had been keeping a journal of my HAE symptoms, triggers, and how much my thoughts and worries were impacting my life with family and friends. So I spoke to my doctor and shared my journal with [her]. We were determined to work together and find the right management plan for me. And we talked through everything—what my treatment options were, how they would fit into my routine. Having that kind of relationship with my doctor has been so important to me.

That last part—speaking with your doctor—is something I want to leave you with today. Get involved! Don’t stay on the sidelines when it comes to managing your HAE. Talk to your doctor and find the right plan for you.

Nobody wants FOMO. I don’t want to miss out on anything! All the little celebrations mean so much to me—I really enjoy going on family trips, checking out concerts, hanging with my friends. It’s the best! I love all the adventures and memories I’m making. Those are the kinds of things I want to be thinking about every day.