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.

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Baylee’s Story

“It’s a miracle you’re still alive.”

April 20, 2017

High school student and common variable immune deficiency (CVID) patient, Baylee Gregory, is an avid golfer and soccer player who hopes to one day play those sports in college. That didn’t seem possible years ago when a doctor commented, “It’s a miracle you’re still alive.”

Now that she’s been diagnosed and is treating her primary immunodeficiency, her mom, Annette, says, “She’s going to live a life that she wants to live and not let things stand in her way.” Baylee and her mom shared their story with BioBlog at the start of World PI Week 2017.

BAYLEE: I always had sinus infections. I always had ear problems, stomach issues. Family trips I would always be the one sick. I’d go to the doctor and they would just tell me that it was allergies or take an antibiotic, it’s another sinus infection, it’ll go away.
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Tim’s Story

“Part of me was slightly ashamed that I had hemophilia growing up. It was something I tried to hide.”

August 4, 2016

New father and hemophilia A patient Tim Grams is an outdoor adventurer. See how Tim isn’t letting this hereditary blood disorder keep him from enjoying the Colorado outdoors, including hiking Dinosaur Ridge and mountain biking at Red Rocks Park. Click the image below to watch the video.

Tim's Story
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