Results of an On-Line Survey of Patients with Hereditary Angioedema

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Hereditary angioedema (HAE) is a rare but potentially fatal disease. An on-line survey was conducted of 63 patients in order to analyze the current clinical status of these patients. Sixty percent (n = 38) had type 1 HAE, 16% (n = 10) had type 2 HAE, and 24% (n = 15) did not know their type. The mean and median ages of onset of symptoms were predominantly in the teenage years. The diagnosis was typically made from 3.8 to 7.8 years after the onset of symptoms. The most common symptoms were abdominal pain and swelling (70%), swelling of extremities (45%), and throat closure (25%). Allergy-like symptoms were present in only 11.7% (n = 7) of patients; hypotension occurred in only one patient (1.6%). The patients averaged 4.7 emergency room visits per year. Nearly one-quarter of the patients were treated for anaphylaxis in the emergency room. There was a high level of dissatisfaction among the patients with the current management of the disease.

Document Type: Original Article

Publication date: March 1, 2004

More about this publication?
  • Allergy and Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists.

    The goal of the Proceedings is to publish articles with a predominantly clinical focus which directly impact quality of care for patients with allergic disease and asthma.

    Featured topics include asthma, rhinitis, sinusitis, food allergies, allergic skin diseases, diagnostic techniques, allergens, and treatment modalities. Published material includes peer-reviewed original research, clinical trials and review articles.

    Articles marked "F" offer free full text for personal noncommercial use only.

    The journal is indexed in Thomson Reuters Web of Science and Science Citation Index Expanded, plus the National Library of Medicine's PubMed service.
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