CSL Behring Patient Advocate Christie Hardin (left) speaks with employees Ryan Cox and Carol Kidwell (right) at CSL Behring’s manufacturing plant in Kankakee, Ill. Hardin visited with employees at the facility to discuss her experience living with hereditary angioedema (HAE).Production of crucial components for treatments of the rare genetic disorder is being ramped up at the facility.
To help improve therapies for the rare genetic disorder she battles each and every day, Christie Hardin went straight to the source.
Hardin shared stories from her experience living with hereditary angioedema, or HAE, with employees recently at CSL Behring’s manufacturing facility in Kankakee, Illinois, where production of crucial plasma components of a recently approved treatment for the rare condition is being ramped up. Once processed, the plasma components are sent to the company’s facility in Marburg, Germany, for final production of the treatment.
Hardin, a nurse and a CSL Behring Patient Advocate from Corydon, Indiana, is among 25 people in her family who have been diagnosed with HAE over five generations, including her mother and daughter. It’s an astounding number considering that between 1 in 10,000 and 1 in 50,000 people are estimated to have the disease, according to HAEi, an international organization comprised of HAE patient groups around the world. As an expert in the challenges that come with living with HAE, CSL Behring employees were eager to gain Hardin’s perspective.
When asked about the painful, disabling swelling HAE can cause, Hardin noted that her condition has given her a surreal tolerance for pain.
“I had no idea I was in labor, because it didn’t hurt,” she said. “The pain was nothing compared to the abdominal HAE attacks I’d experienced.”
Rhonda Linneman, who works in quality control at the plant, was among the employees who attended a town hall event with Hardin.
“I’ve worked here for over 30 years and had no idea the impact of a rare disease like HAE,” Linneman said, adding that she’s proud that she and her co-workers can help patients like Hardin “live a more active life.”
Finding freedom from the debilitating attacks that come with HAE is a goal for those living with the condition. The attacks happen when a key protein, C1-INH, that controls swelling is either missing or not functioning properly. The swelling can strike anywhere on the body, but characteristic locations include the abdomen, face, hands, feet, genitals and even the throat, which puts patients at risk of asphyxiation and often requires hospitalization.
Hearing Hardin’s story was a moving moment for Dave Atkinson. As a Manufacturing Representative at the Kankakee site, Atkinson tended to focus on the technical aspects of his position instead of the human impact of his work. He found familiarity in Hardin’s tales of incorrect diagnoses and “fruitless treatments.”
“Having a spouse with a similar disorder, it struck home that she experiences the same difficulties in life that my wife faces,” Atkinson said. “While I’m normally stoic and not given to tender emotions, I could not help tearing up when I was able to speak to Christie personally.”
The experience also served as inspiration for employees like Inspection Operator Karin Noble, who said, “meeting someone with a rare disease made me more aware and proud of what we do at CSL.”
After exchanging handshakes and hugs with CSL Behring employees, Hardin called the experience a highlight of her career as a patient advocate.
“I hope knowing what you all do each day has improved my life and my family's has renewed your drive and made you feel good about what you are doing.”