"A proper diagnosis and treatment has helped my family."
Condition: Hereditary Angioedema (HAE)
Therapy: C1 Esterase Inhibitor

While growing up in Japan, Chieko-san’s mother recorded every symptom of every one of her Hereditary Angioedema (HAE) attacks in a diary (pictured). Despite keeping a record of each attack, and the fact that several members of her family experienced similar bouts with painful swelling, it took several years for Chieko-san to be properly diagnosed with HAE.

HAE is a rare, potentially life-threatening disorder caused by a deficiency of C1 esterase inhibitor (C1-INH). The condition is inherited and its symptoms -- substantial and painful swelling in specific parts of the body, including the intestines, face, hands, feet, and/or larynx --can appear similar to other medical conditions, such as an allergic reaction.

"When I was 13 years old, I had an impacted wisdom tooth extracted by an oral surgeon," Chieko-san said. "My face began to swell beyond recognition and my right fist also increased in size. I had excruciating pain in my abdomen and my oral surgeon mentioned HAE as a possible cause. He had also treated my grandmother and noticed consistent symptoms with my family."

Chieko-san visited her physician and the symptoms eventually subsided. For four more years Chieko-san endured painful attacks until, at the age of 17, she was properly diagnosed with HAE.

"When I had an attack and my stomach swelled, I was unable to eat or drink. I also vomited multiple times per day, which left me exhausted," Chieko-san said. "Swelling of the hands is endurable, but vomiting regularly gave me such a hard time, I didn’t feel like talking to anyone."

Since being properly diagnosed with HAE, Chieko-san takes comfort in knowing C1 Esterase Inhibitor is available. CSL Behring's C1 Esterase Inhibitor offers more than 30 years of international clinical use experience. It is also licensed in 30 countries around the world, including Japan, Germany, Switzerland, US, Canada and Australia.

"Knowing an appropriate treatment is available brings me a sense of security in case of an emergency," Chieko-san said. "A proper diagnosis and treatment has helped my family. C1 Esterase Inhibitor was administered when my father had a serious laryngeal attack and was also used to treat my sister. I think my mom has been relieved very much since my family began managing HAE with C1 Esterase Inhibitor."

Nowadays, in her 20s, Chieko-san is enjoying her time as a newlywed. She works in an office and as a homemaker. She also looks forward to starting a family.

"I want to have three children," Chieko-san said.

For more information about HAE, please visit


Contact for Personal Stories:
Greg Healy
Senior Manager, Communications & Public Relations
Commercial Operations

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