Publication of new Canadian guidelines an important step to increasing recognition of symptoms of this rare disorder
OTTAWA, Jan. 30, 2015 /CNW/ - Hereditary Angioedema (HAE) Canada wants to put HAE on the map. The recent publication of new Canadian guidelines for management of the rare disorder is a first step, and will hopefully lead to greater awareness of HAE in the medical community, speeding diagnosis and access to appropriate treatment for Canadian patients.
The lack of awareness of the disease and recognition of the symptoms results in patients waiting eight or more years for a correct diagnosis. Often patients take ineffective drugs and even undergo unnecessary surgeries because HAE symptoms can resemble appendicitis and other abdominal problems that require surgery. A delayed diagnosis also means that patients don't have access to available treatments to lessen the impact of the unpredictable and sometimes dangerous attacks of swelling that can occur in different parts of the body that are the hallmark of this disorder.
New Guidelines: A step in the right direction
HAE Canada sees the recent publication of the new Canadian guidelines for the management of HAE as an important step in increasing recognition of symptoms not just by doctors who may be faced with an HAE patient, but also by other health professionals, such as dentists, whose routine interventions can trigger HAE swelling attacks.
"HAE is a rare disorder affecting less than a thousand Canadians. For those who have it, early recognition and treatment can make a huge difference in their quality of life, and even be life-saving," said Jacquie Badiou, President of HAE Canada. "HAE is often mistaken for allergic reactions or other illnesses, leading to inappropriate treatments. We need more health professionals to be aware of HAE and consider it as a possibility when patients present with symptoms. This awareness could save patients years of misdiagnosis and frustration because HAE patients who are adequately treated have the opportunity to live healthy lives."
The new Canadian HAE guidelines have been authored by 33 Canadian, American and European experts who reviewed the latest scientific information and evidence to develop 23 recommendations, including evaluations of the several different therapies to both treat and prevent attacks. The guidelines recommend early treatment of attacks to reduce their impact and training for patients to promptly administer their own therapy as soon as possible after the start of an attack. They also recommend that use of preventive therapies over the long term be individualized by the patient with their HAE specialist.
"We are optimistic for what this could mean for people living with HAE. These new guidelines will contribute to a more consistent approach across Canada for the management of this disease. We also hope the publication will raise awareness in the broader medical community of HAE and the need to be vigilant for its symptoms even though it is a rare disorder," said Dr. Stephen Betschel, a specialist in allergy and clinical immunology at St Michael's Hospital in Toronto, lead author of the guidelines and President of The Canadian Hereditary Angioedema Network (CHAEN), an organization of physicians who treat and/or are interested in HAE and who developed the new guidelines.
The new Canadian HAE guidelines have been published in the open access journal Allergy, Asthma & Clinical Immunology and are available at: www.aacijournal.com/content/10/1/50.
About Hereditary Angioedema (HAE)
HAE is a rare genetic disorder that results in recurrent but unpredictable, sometimes disfiguring and often painful episodes of acute swelling (edema). They can affect any part of the body, but most commonly occur in the face, gastrointestinal tract, extremities (hands, arms, feet, legs) or genitals. When the swelling occurs in the throat, it can be life-threatening due to suffocation. Attacks can occur quickly and last several days, usually occurring at least once a month, resulting in 20 to 100 days of incapacitation per year. HAE can severely impact the personal, working and social life of those with it and their families. A child of a parent with HAE has a 50 per cent chance of also having the disease and symptoms can begin in childhood. However, about 25 per cent of cases start spontaneously in adults. Diagnosis must be confirmed by genetic testing. The most common forms of HAE, Type I and Type II, are caused by genetic mutation that leads to a dysfunction or deficiency in the C1 esterase inhibitor (C1-INH) protein in the body. There is also a very rare form, called Type III HAE, which is sometimes referred to as idiopathic angioedema, which does not involve C1-INH. HAE affects approximately one in every 50,000 people, or about 700 Canadians.
About HAE Canada
HAE Canada is a patient group that was formed in 2010 to work with physicians, nurses and other health care professionals to create a better life for those patients living with HAE and other related angioedema in Canada. For more information, visit www.haecanada.org.
This press release is part of an HAE Canada awareness campaign that was made possible through the support of Shire Canada Inc.
SOURCE Hereditary Angioedema (HAE) Canada
For further information: Timothy Howe, Executive Director, HAE Canada, 613-761-8008, [email protected]