Tuesday, April 20, 2010

HAE Hope website has information and tools to help more patients receive accurate diagnosis and better care

The website, www.HAEHope.com, launched recently by Dyax Corp., offers resources to help patients and their families better understand and manage HAE, a rare, genetic disease characterized by episodes of severe and painful swelling.

A number of features of HAE Hope are designed to help patients with HAE. These include an "Ask the Expert" feature offering responses from an HAE treating physician, key questions to facilitate a discussion with a healthcare professional, and a personalized wallet card identifying a patient as someone with HAE and describing typical disease symptoms to use in case of an emergency. Another unique feature of HAE Hope is a 3-D animation that provides an overview of the physiological processes associated with HAE.

"HAE Hope provides valuable information that can better equip patients to gain more control over their disease and handle the challenging situations they confront regularly," says Greg Costa, who was diagnosed with HAE more than 20 years ago at the age of 19. "As a father of two, I also understand how important it is to have resources like HAE Hope available for patients' family members to teach them about this debilitating disease and how to manage potential emergencies with their loved one."

HAE is a rare, genetic disease caused by low or dysfunctional levels of C1 esterase inhibitor, a naturally occurring molecule that inhibits plasma kallikrein, a key mediator of inflammation. The condition is "hereditary" because it is caused by a genetic deficiency that is passed down in families. When a parent has HAE, there is a 50% chance that his or her child will inherit the disease, which can help with an earlier diagnosis. However, in as many as 25% of patients, the gene mutates on its own. Consequently, many patients are unaware they have HAE and may receive a delayed diagnosis.

"Even when HAE is inherited, it is often unrecognized or misdiagnosed because it is rare and its symptoms are similar to those of many other conditions. Historically, the interval between the onset of symptoms and diagnosis has been as long as 10 to 20 years," explained Dr. Andrew J. MacGinnitie, HAE treating physician and allergist/immunologist at the Children's Hospital of Pittsburgh of UPMC. "The information and tools provided on HAE Hope may help more patients receive an accurate diagnosis, and better understand their symptoms and how to manage them."

In addition to the tools described above, HAE Hope offers several other user-friendly features, including:
  • A "Do I Have HAE" questionnaire designed to help patients track their symptoms to facilitate a discussion with their healthcare provider if they are experiencing possible indicators of HAE
  • Helpful tips from HAE patients on topics ranging from managing attacks to parenting a child with HAE
  • Links to other online resources to learn more about HAE, including the U.S. Hereditary Angioedema Association

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