Allergy Community & Information
Friday March 24th 2017

American Academy of Nurse Practitioners (AANP) Joins “HAE: Learn About It, Talk About It,” Consortium of Specialist Organizations Committed to Advancing Care of Patients With Hereditary Angioedema (HAE)

The American Academy of Nurse Practitioners (AANP) today announced it has joined a growing collaboration of professional organizations in the program, “HAE: Learn About It, Talk About It.”  This peer-to-peer clinician education program facilitates education and dialogue among several disciplines and specialties that see patients with hereditary angioedema (HAE), a rare, and potentially fatal swelling disorder, to improve accurate diagnosis and appropriate management of the disease.

“The rate of misdiagnosis and delayed diagnosis for HAE is still alarmingly high, and the AANP is proud to bring this program to our members during the 26th Annual Conference to provide the education that may help improve care for HAE patients,” said Mary Jo Goolsby, EdD, MSN, NP-C, CAE, FAANP, Director of Research & Education at AANP.  “The launch of our partnership this week highlights the importance of HAE, in recognition of the critical role NPs can play in improving time to diagnosis and appropriate management and demonstrating our commitment to working with other specialties to improve care for patients.”

HAE affects about at least 6,000 people in the United States and is characterized by recurrent, unpredictable, debilitating, and potentially life-threatening attacks of swelling that can occur almost anywhere in the body, including the larynx, abdomen, face, extremities and urogenital tract.   About 68 percent of people with HAE are initially misdiagnosed, and for some patients, it has taken up to 20 years to receive an accurate diagnosis.  Patients with HAE can experience up to 100 days of incapacitation per year, which can make it difficult to hold down a job, excel in school, or participate in daily activities, and about a third of patients have undergone unnecessary surgery.

“As a nurse practitioner in an allergy specialty practice, I know that rare diseases like hereditary angioedema may be overlooked when evaluating the causes and clinical presentation of swelling symptoms.  It’s important for clinicians to know that HAE attacks do not respond to drugs used to treat other forms of urticaria and swelling such as antihistamines, epinephrine and corticosteroids, and if left untreated, the disease can be fatal,” said Kathryn Blair, PhD, FNP-BC, AANP program advisor, nurse Practitioner at the Williams Storms Allergy Clinic Colorado Springs Colorado and Professor and option NP coordinator at the University of Colorado- Colorado Springs.  “An accurate and timely diagnosis is more important than ever because it can put patients on the path to appropriate management faster.”

“HAE: Learn About It, Talk About It,” which launched in May 2010 as a joint effort of the American College of Allergy, Asthma and Immunology (ACAAI) and the American Gastroenterological Association (AGA) Institute, has since grown into a collaboration amongst the ACAAI, the AGA, the World Allergy Organization (WAO), the American College of Emergency Physicians (ACEP), the American Academy of Nurse Practitioners (AANP), and the Society of Emergency Medicine Physician Assistants (SEMPA).  The program is supported by ViroPharma Incorporated.

Nurse practitioners can learn more about HAE at booth 3117 at the American Academy of Nurse Practitioners 26th Annual Conference in Las Vegas, NV, June 21-26.

About HAE: Learn About It, Talk About It

“HAE: Learn About It, Talk About It” is a clinician education program aimed at uniting disparate specialties that see patients with HAE to improve patient care through increased awareness and education, more timely diagnosis, and appropriate disease management.   The core component of this program is an informational and interactive Website – www. LetsTalkHAE.com – which provides health care providers with the tools they need to more readily diagnose symptoms and properly manage HAE.

The Website features targeted content for various specialties that may see patients presenting with HAE symptoms, as well as several educational resources, including a podcast series, iPhone application, archived Webinar, videos from HAE-treating clinicians and case studies.  LetsTalkHAE.com also features a tool where clinicians can find a local HAE-treating allergist/immunologist or can register as an HAE-treating allergist/immunologist.  For more information, visit www.LetsTalkHAE.com.

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