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.
At CSL Behring we have been working collaboratively with patient organizations for years, informed by our core value that patients come first. Our CEO Paul Perreault puts it this way: “If you take care of the patients, the business takes care of itself.” It has also been our experience that the sole commitment of every patient group with which we collaborate is to the health and well-being of their members.
Researchers are targeting autoimmune epilepsy and chronic inflammatory demyelinating polyneuropathy.
By Karen MacPhail and Gabriela Espinoza, MD
July 25, 2017
As many as one billion people worldwide suffer from more than 600 neurological disorders, according to the World Health Organization and University of California, San Francisco, respectively. Of that number, it is estimated that 6.8 million people die each year from neurological disorders ranging from epilepsy to Alzheimer’s disease.
Neurological disorders affect the central nervous systems or the peripheral nervous systems and can impair the brain, spinal cord, peripheral nerve or neuromuscular function.
When we first met Yesli Jordán Paillacán, she was a shy young girl living in Araucanía, Chile’s poorest region in terms of gross domestic product per capita where 80 percent of the population depends on the public health system. Yesli’s life had been continually disrupted by frequent hospitalizations that typically lasted from five to 10 days, and by other health complications that dramatically affected her quality of life.
Access to care in rural areas
She could not attend school regularly, particularly in the winter, when weather conditions exacerbated her condition. Access to care for patients like Yesli in rural areas of Chile is complicated by the distances that often separate them from hospitals and health care centers. In rural areas patients must often travel over rugged mountainous terrain to receive medical treatment.
That’s why awareness opportunities such as HAE Day are so important.
By Debra Bensen-Kennedy, MD
May 15, 2017
Like many physicians, I learned about hereditary angioedema (HAE) during a brief moment in my years of education and training. Had I not worked at CSL Behring, HAE would likely never cross my mind again, given its rarity.
Medical professionals juggle troves of clinical information, and on HAE Day we help keep the disease top of mind. Because HAE attacks can be life-threatening if they occur in the throat, it is extremely important for healthcare professionals to know what to do when they encounter a patient, even if their only other experience with the condition was during their medical training.
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