Jutta Kohaut & Karin Weide

Jutta Kohaut & Karin Weide
"We try to allow as much normality as possible, and we manage that very well these days"
Condition: Hereditary Angioedema (HAE)
Therapy: Berinert® P, (C-1 Esterase Inhibitor)

Identical twin sisters and successful businesswomen Jutta Kohaut and Karin Weide were both born with a rare and serious medical disorder, Hereditary Angioedema (HAE). The condition, caused by a deficiency of C-1 esterase inhibitor (C1-INH), is inherited and potentially life-threatening.

Because the symptoms of HAE -- 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, it took nearly 8 years for Jutta and Karin to receive an accurate diagnosis.

"We were both around 10 years old when our first symptoms occurred, and at that time no one suspected HAE," Karin said. "The disease was first identified in me (at the age of 18). In the beginning doctors tested me for rheumatism, because my joints were swollen, although the real cause of the swellings was HAE."

Jutta added, "And naturally it didn't take long before HAE was identified in me too – we are identical twins after all."

"The disease runs in our family," Karin added. "Our grandmother probably suffocated due to untreated laryngeal oedema. Today we know the cause."

After diagnosis, both Jutta and Karin began treatment with a synthetic attenuated androgen. While on this treatment they experienced several side effects including weight gain.

The sisters eventually switched to Berinert® P (human pasteurized C1-Esterase Inhibitor) from CSL Behring. The product, approved in Germany for treatment of acute attacks of HAE type I and type II, offers 30 years of international clinical use experience.

Nowadays, more than 2 decades since they began treating HAE with Berinert P, Jutta and Karin self-administer their therapy when they begin to experience first symptoms of an acute attack.

"Then and today, most of the attacks are around the stomach and bowels," Karin continued. "However, if I have an anaesthetic at the dentist, I do occasionally have swelling in my face. Just a typical trauma reaction."

Jutta added, "Occasionally I have swellings on my back or around my genitals, they're very painful. On the other hand, I've never had a swelling around my larynx. The frequency of our attacks is different. And we need different doses of emergency medication to treat an acute attack."

When not running their successful party service/catering company, Karin and Jutta lead normal lives, frequently gardening and jogging.

"I think we manage pretty well," Jutta said. "We try to allow as much normality as possible, and we manage that very well these days."


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

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