Shari Starr
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"It really is emotionally draining for all of the family."
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Condition: Hereditary Angioedema (HAE)
Therapy: Berinert
® (C-1 Esterase Inhibitor)
When Shari Starr was 11 years old, her thumb began to swell beyond recognition. Shari urgently went to her mother to show her what was happening.
"I immediately knew from the expression on my mom’s face that I also had the rare swelling that she had," Shari said.
Hereditary Angioedema or HAE
is a rare, potentially life-threatening disorder caused by a deficiency of C-1 esterase inhibitor (C1-INH). The condition is inherited and the
symptoms of HAE, which include unpredictable, 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 allergic reactions.
"When your babies want a hug from you and you can’t even let them touch you because you’re in so much pain, it really is emotionally draining for the whole family," Shari said.
Despite a family history of extreme swelling and enduring bouts of excruciating pain, it took Shari more than 10 years to be accurately diagnosed with HAE.
"My mom and I read a newspaper article that described a woman with HAE," Shari said. "She talked about the different symptoms and it sounded just like what my mom and I had been suffering with. We went for years without having a proper diagnosis or even knowing what to test for, and now we finally had one."
Today, Shari treats HAE at-home with
Berinert® (C1-Esterase Inhibitor) from
CSL Behring. Shari self-administers the therapy when she begins to feel the symptoms of an HAE attack.
Berinert offers more than 30 years of international clinical use experience and is licensed in 30 countries around the world, including Germany, Switzerland, Australia, Japan and Canada. In the US, Berinert is indicated for on-demand treatment of life-threatening laryngeal HAE attacks, as well as facial and abdominal attacks.
"Treatment has given me a new sense of security and freedom," Shari commented. "I love that I can now treat myself at the first sign of an attack and know that it will work quickly. It has given me the ability to carry on with my day; it’s amazing. I’m now able to travel and go back to school and do the things that I had previously put on hold."
Committed to helping others who are living with HAE, Shari has become a patient advocate for CSL Behring’s Berinert PALS (Peer Advocates for Learning and Support) program. In this program she helps people newly diagnosed with HAE or new to HAE treatment by sharing her story, answering non-medical questions, and relating her experiences with Berinert home self-administration.
"My motivation for becoming a patient advocate is really to help other people who have this disease. I don’t want others to suffer like my mom and I suffered due to misdiagnosis or not having adequate treatments," she added.
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Contact for Personal Stories:
Greg Healy
Senior Manager, Communications & Public Relations
Commercial Operations
610-878-4841
greg.healy@cslbehring.com