Living with Hereditary Angioedema Can Be Frightening

Hereditary angioedema (HAE) is a rare genetic disease caused by a deficiency or dysfunction of a protein called C1 esterase inhibitor. HAE can cause swelling in certain parts of the body, such as the stomach, hands, and face, which can be painful and, in some cases, life threatening.

August 31st, 2017

Margaret Mary Conger, a member of CSL Behring’s Patient Engagement and Reimbursement team, recently sat down with Tad Rockwell, hereditary angioedema patient, clinical trial participant and passionate advocate, who spoke candidly about his long and scary road to diagnosis and treatment.

Tad Rockwell, who battled hereditary angioedema since he was a child, enjoys making breakfast for his family.


BioBlog: When did your HAE symptoms start, and when were you first diagnosed?
Tad: I was only 5 years old when my first HAE attack happened, and it was very scary. My mouth started to swell up in the middle of the night and my tongue was so thick that I could barely breathe, so they rushed me to the emergency room. This was the first of many times HAE threatened my life, even though at the time I didn’t even know I had this rare disease.

Like most patients with HAE, I was misdiagnosed for many years before finally getting a correct diagnosis at age 23. That was 18 years after my first attack. It was then that I started to put the pieces together, but it was still more years before I got my disease under control.

BioBlog: How would you describe an HAE attack to someone who has never felt or witnessed it?
Tad: They can be really inconvenient and uncomfortable, and they are impossible to predict or plan for. And the abdominal attacks I experienced were excruciatingly painful, making it impossible for me to function. They would have me on the floor, writhing in pain and unable to speak.

BioBlog: How did having frequent HAE attacks impact your life and that of your family?
Tad: My life was muted and diminished. It was very hard for me to function as exercise, and my health was deteriorating. I was afraid that I would leave my kids without a father. And my family had to watch me experience those excruciating attacks, something I would never wish on anyone. We all paid a steep price, and it was a miserable way to live.

BioBlog: When did things start to change for you?
Tad: I was in denial about my disease for many years. But eventually, my wife took matters into her own hands after a particularly scary laryngeal attack and reached out to the U.S. Hereditary Angioedema Association (HAEA) for help. They connected me with a local physician who is experienced in managing HAE, and I enrolled in a clinical trial for a new experimental treatment, thinking I would do what I could to help people like me. And at one point during the study, I realized it was the first time in my adult life that I wasn’t thinking about getting another attack – I could just live my life.

BioBlog: How are you today?
Tad: My life today is so different than it used to be. I no longer have to base my life on my health or HAE, and that was unimaginable just a few years ago. I can get up every day, make my kids breakfast, get them off to school, go skiing, do my business, make phone calls, travel the world, whatever it is. I’m not thinking about a, “Yeah, but –” with HAE anymore. It’s an incredible feeling.

BioBlog: What advice do you have for others with HAE?
Tad: I think that most people with rare diseases just have the desire to feel “normal,” but what I have learned is that you don’t have to just settle for normal, your life can be remarkable. With the latest advancements in testing and treatment, no one with HAE ever has to relive my story, ever again. Be an advocate for yourself, ask questions, and seek out the care that you deserve so you can move on and live your life like I’ve learned to do.

To learn more about HAE, including living with and managing the disease, visit www.AllAboutHAE.com.

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Margaret Mary Conger is Senior Patient Engagement Associate at CSL Behring.

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