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6 questions to ask your doctor about HAE attacks

Preventing HAE attacks, avoiding triggers, and when to seek emergency treatment.

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Hereditary angioedema, also known as HAE, is a rare genetic disorder that causes recurring episodes of severe swelling. These attacks most commonly affect the hands, feet, face, genitals, the gastrointestinal tract, and the throat.

There is no cure for HAE, but there are treatments available that can help people with HAE manage the condition.

The following slides look atShow More

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What can trigger an HAE attack?

Most HAE attacks are not associated with an identifiable trigger. But mental stress, physical exertion, minor traumas and injuries, dental work, surgery, and illnesses like the flu are all known to be potential triggers for an HAE attack.

Women who are menstruating, pregnant, and breastfeeding alsoShow More

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Do I need a preventive therapy?

There are two basic types of treatments available for HAE—treatments that reverse attacks and treatments that prevent attacks from occurring. Preventive therapies may be prescribed for short periods of time, to prevent a potential attack brought on by dental work, surgery, or pregnancy.

Long-termShow More

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Will I feel an attack coming on?

There is at least one published study of people with HAE where a large percentage of participants reported they could feel when an attack was in the near future.

Also, some people will experience symptoms during the 48 hours before an HAE episode. These symptoms may include fatigue, muscle aches, aShow More

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How do I treat an attack?

People diagnosed with HAE will be prescribed a treatment to reverse an attack. These treatments are usually taken by an injection or infusion. This will be a different medication than a preventive therapy.

If you experience an attack, take your treatment as directed, and take it as soon as possible.Show More

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Will I need emergency care?

Some HAE episodes can be life threatening and require emergency care. Episodes that affect the airways can cause asphyxiation.

Severe gastrointestinal attacks may also require emergency medical treatment to address pain, cramping, dehydration, and other symptoms. Gastrointestinal symptoms may alsoShow More

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What do I do after an attack?

Follow your healthcare providers instructions for recovering from an attack. If you administered a treatment at home, refill your prescription as soon as possible, since HAE attacks are unpredictable and you will need to be prepared for another.

Many healthcare experts recommend keeping a journalShow More

Slideshow sources open slideshow sources

Peter J. Delves. "Hereditary and Acquired Angioedema." Merck Manual. October, 2020.
U.S. Hereditary Angioedema Association. "What is Hereditary Angioedema (HAE)?."
U.S. Hereditary Angioedema Association. "Triggers: What Causes Hereditary Angioedema Attacks?"
Zsuzsanna Zotter, Dorottya Csuka, et al. "The influence of trigger factors on hereditary angioedema due to C1-inhibitor deficiency." Orphanet Journal of Rare Diseases, 2014. Vol. 9.
William R. Lumry. "Current and Emerging Therapies to Prevent Hereditary Angioedema Attacks." AJMC. August 21, 2018.
U.S. Hereditary Angioedema Association. "Approved HAE Treatments."
J.G. Gibbs and T.J. Craig. "Prodromal Symptoms Before Exacerbations of Hereditary Angioedema." The Journal of Allergy and Clinical Immunology, 2007. Vol. 119, No. 1.
Michael J. Prematta, Againdra K. Bewtra, et al. "Per-Attack Reporting of Prodromal Symptoms Concurrent with C1-Inhibitor Treatment of Hereditary Angioedema Attacks." Advances in Therapy, 2012. Vol. 29.
Callie Dagen and Timothy J Craig. "Treatment of Hereditary Angioedema: items that need to be addressed in practice parameter." Allergy, Asthma & Clinical Immunology, 2010. Vol. 6.
Hilary Longhurst. "Optimum Use of Acute Treatments for Hereditary Angioedema: Evidence-Based Expert Consensus." Frontiers in Medicine, 2018.
Roxana Siles. "Hereditary Angioedema." Cleveland Clinic. April 2017.
Angioedema News. "Hereditary Angioedema and Gastrointestinal Complications."
MedlinePlus. "Hereditary angioedema."
Napoleon Patel, Lisbet D. Suarez, Sakshi Kapur, and Leonard Bielory. "Hereditary Angioedema and Gastrointestinal Complications: An Extensive Review of the Literature." Case Reports in Immunology, 2015. Vol. 2015.
Discover HAE. "Be prepared for a hereditary angioedema (HAE) medical emergency."
American Academy of Allergy, Asthma & Immunology. "Understanding Hereditary Angioedema."

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