Breaking the Cycle: Finding Relief From Hereditary Angioedema

I vividly remember moments from my childhood when something exciting was on the horizon—birthday parties, holidays, trips to the local county fair. My anticipation would build, excitement would take over, but unlike other kids, what often followed were crippling stomachaches. For years, I found myself sitting on the sidelines, missing out on life’s joyful moments. Eventually, I began to believe this was just my normal—something I simply had to endure.

As I got older, what I was experiencing became more unpredictable and harder to make sense of. Severe swelling in my hands and feet began to appear without warning, and I had no idea what was causing it. For a while, I even thought grapes might be to blame and gave up something I loved. I remember countless doctor visits, but no one was able to figure out what was causing these issues. It wasn’t until I was 12 (five years after my symptoms started) and my siblings began to experience similar episodes that we finally received a diagnosis: hereditary angioedema (HAE).

Even though several of my siblings were diagnosed with HAE, each of us had our own experience with it, which led to very different stories. I frequently suffered from stomach pain, while others dealt with swelling in their hands, feet, and abdomens. One of my sisters was intubated multiple times. We eventually learned that we inherited HAE from my mother’s side of the family when my cousins also began experiencing symptoms.

Growing up in Dearborn, Michigan, I followed in my family’s footsteps and began working for Ford Motor Company after completing my education. But after one harsh Michigan winter too many, I moved to Southern California, transferring to Ford Aerospace in Newport Beach. It was a new adventure where I made great friends and met my husband. Surprisingly, my HAE remained relatively quiet, seeming to retreat into the background.

Life took another turn when I became pregnant, and I began experiencing stomach issues and swelling again. After my daughter was born, my swelling episodes became more frequent and severe. ER visits became routine, and I often ended up bedridden with intense stomachaches, vomiting, and diarrhea. Because HAE is a rare disease, some doctors didn’t know what it was and unfortunately, a few even assumed I was faking the pain or seeking drugs.

Years went by, and I continued to experience the same struggles. It felt like a repeating cycle, and at this point, I had two daughters—one of whom was also diagnosed with HAE—and a son. I was determined not to let HAE hold me back and tried to live my life as normally as I could. I even switched careers and became a licensed vocational nurse. I learned to live with the extremity swells, buying bigger shoes for when my feet swelled and figuring out how to write with swollen hands. After another severe and painful abdominal swell landed me in the ER, I met a new doctor who later recommended that I participate in a clinical trial for ANDEMBRY® (garadacimab-gxii).

My doctor explained that ANDEMBRY inhibits factor XIIa at the top of the HAE cascade to prevent attacks. Upon learning more, I decided to join the trial—and later discovered I was the first person to receive ANDEMBRY in the clinical study.

After a couple months of treatment, I realized I hadn’t had a single abdominal or extremity swell since starting ANDEMBRY. Life only got better from that point. I wasn’t getting sick to my stomach anymore, I could handle stressful events without a physical reaction, and I lost weight caused by my previous HAE medication. I threw out my oversized shoes and even started eating grapes again!

Treatment with ANDEMBRY is so simple for me. It's an auto-injection I give myself under the skin of my abdomen once a month, and it takes about 15 seconds or less. Common side effects could include runny or stuffy nose, watery eyes, abdominal pain, and injection-site reactions. I haven't had any injection-site reactions or headaches, but everyone is different so it’s important to talk to your doctor about any side effects.

In retrospect, HAE is one of the most difficult things I’ve faced. But with ANDEMBRY, I often forget I have this unpredictable rare disease. I’m grateful that I can enjoy my retirement, travel around the world, spend time with my grandkids, and embrace other activities I love that make life exciting.

By helping me take control of my health, ANDEMBRY has made it possible for me to help others. For the past five years, my family has supported an orphanage in Uganda—we helped get it built, and I’ve led several fundraising initiatives to support their ongoing needs. Now that I feel more confident managing my HAE, I’m planning to turn this grassroots effort into a 501(c)(3) nonprofit. The relief of not feeling chained to HAE anymore is amazing. I’m deeply grateful for this medication and only wish I’d had it earlier in life.

If you’re living with HAE, don’t settle. Talk to your doctor about treatment options that might help you better control your HAE attacks. Relief is possible—and life can feel fuller, more joyful, and less defined by HAE. I’m especially grateful knowing my daughter has a brighter future with HAE than I did at her age—and that gives me hope for everyone living with this disease.

IMPORTANT SAFETY INFORMATION

What is ANDEMBRY?

ANDEMBRY® (garadacimab-gxii) injection, for subcutaneous use, is a prescription medication used to prevent attacks of hereditary angioedema (HAE) in people 12 years and older.

It is not known if ANDEMBRY is safe and effective in children under 12 years of age.

What should I tell my healthcare provider before using ANDEMBRY?
Before using ANDEMBRY, tell your healthcare provider about any medical condition you may have, especially if you are pregnant, planning to become pregnant, breastfeeding, or planning to breastfeed. It is not known if ANDEMBRY can harm your unborn baby or if ANDEMBRY passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while using ANDEMBRY.

Tell your healthcare provider about all medications you take, including prescription medicines, over-the-counter treatments, vitamins, and herbal supplements.

How should I use ANDEMBRY?
Use ANDEMBRY exactly as instructed by your healthcare provider. Detailed instructions for use can be found in the patient information section of the full prescribing information.

ANDEMBRY is given as an injection under your skin (subcutaneous) by you or a caregiver. Your healthcare provider should show you or your caregiver how to prepare and inject your dose of ANDEMBRY before you inject yourself for the first time. Do not try to inject ANDEMBRY unless you have been trained by your healthcare provider.

What are the possible side effects of ANDEMBRY?

The most common side effects of ANDEMBRY include:

• Redness, itchiness, and bruising (injection-site reactions)


• Stomach (abdominal) pain


• Runny or stuffy nose, sneezing, watery eyes (nasopharyngitis)

Please see full prescribing information for ANDEMBRY, including patient information and instructions for use.

You are encouraged to report negative side effects of prescription drugs to the FDA.

Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.

ANDEMBRY is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC.
ANDEMBRY® is a registered trademark of CSL Behring GmbH.
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The US HAEA is product and company neutral and does not endorse or recommend HAE medicines.

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