Living with Acquired angioedema
A rare condition in adults with repeated episodes of swelling of the face, body, or digestive tract.
Understanding Acquired angioedema
Swelling can last several days and can affect the face, lips, tongue, limbs, or genitals. Swelling of the digestive tract can cause belly pain and nausea. Swelling of the upper airway can be serious. Triggers include mild trauma such as dental work, viral illness, cold, pregnancy, certain foods, or stress. GARD lists onset as adult.
Signs & symptoms
GARD doesn't list a symptom list for this condition yet. The summary describes these features:
- Swelling of the face, lips, or tongue
- Swelling of the arms, legs, or genitals
- Abdominal pain and nausea
- Swelling of the upper airway
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists and allergy and immune system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Allergy and immune system specialists (allergists / immunologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Allergy & Asthma Network Mothers of Asthmatics
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD describes two forms. Type 1 is linked with other diseases such as lymphoproliferative and autoimmune diseases. Type 2 involves autoantibodies against a blood protein called C1-INH.
Also known as: aae; acquired angioneurotic edema; acquired angioneurotic oedema; acquired bradykinine-induced angioedema; acquired c1 inhibitor deficiency; acquired non histamine-induced angioedema
Patient organizations
- Allergy & Asthma Network Mothers of AsthmaticsAcquired angioedema · United States
You are more than your diagnosis
Perspectives from people navigating life with Acquired angioedema.
Explore research for Acquired angioedema
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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