Hereditary Angioedema (HAE) Symptoms: Episode Timing and Locations
Medically reviewed by Steffini Stalos, DOMedically reviewed by Steffini Stalos, DOHereditary angioedema (HAE) is a rare inherited condition that causes episodes of swelling inside and outside the body. Its effects can include visible symptoms, such as hand swelling, as well as symptoms due to swelling inside the body, such as abdominal discomfort.The effects and symptoms of HAE can occur unexpectedly and with an unpredictable pattern. Certain triggers, such as getting a cold or experiencing stress, can also cause the symptoms to develop.HAE treatments can help prevent episodes from occurring, and some medications can help decrease the impact of an episode that’s occurring.Recognizing Hereditary Angioedema SymptomsThe key effects of HAE are swelling of the hands, feet, tongue, throat, and intestines. The effects of HAE can cause you to feel tired and sick overall, in addition to your specific symptoms. Often, the first symptoms of HAE begin during childhood, may worsen during adolescence, and continue into adulthood.Some people may notice warning signs before an episode, which may involve tingling, nausea, or fatigue.
Related: What Is Angioedema?
Emergency Symptoms Breathing problems due to tongue or throat swelling are the most serious symptoms of HAE. If you or anyone you know (who has or has not been diagnosed with HAE) appear to be choking or having trouble breathing, it’s important to get emergency medical attention.Gastrointestinal (GI) symptoms of HAE can become serious and even potentially life-threatening. If nausea, abdominal discomfort, pain, or vomiting become severe or persistent, get medical attention.
Reproduced with permission from © DermNet dermnetnz.org 2023.
Related: Symptoms of Angioedema
Skin SymptomsThe most visible symptoms of HAE are angioedema of the hands and angioedema of the feet. The swelling of the hands and feet looks like puffiness, can cause pain and discomfort due to stretching of the skin, and can affect one or both sides of the body. Sometimes HAE is associated with a skin rash.
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GI SymptomsSwelling of the intestines can cause a variety of symptoms that are vague and not necessarily specific to HAE. GI symptoms of HAE include:Abdominal discomfortAbdominal painBloatingDiarrheaNauseaVomitingIf you or your child has already been diagnosed with HAE, these symptoms could indicate a flare-up.
Does Not Respond to Medications for Allergic ReactionsSymptoms of HAE do not improve with treatments typically used for allergic reactions, such as antihistamines and steroids.
Symptom Timing and Frequency of EpisodesSymptoms of HAE episodes begin suddenly and typically develop over a few hours. If not treated, they may last up to a week.Some people may experience more frequent and severe effects. Others with the condition may not have as many effects. Noticing the timing, triggers, or any factors that may be associated with your symptoms can help reduce the likelihood of having them.Therapies used to treat ongoing symptoms and certain medications used to prevent symptoms can help reduce the frequency, severity, and impact of your symptoms.
Unpredictability of HAE symptomsOne of the hallmarks of HAE is its unpredictability. It can be difficult to know when you will have symptoms, and the stress of uncertainty can also trigger symptoms. It can help to work through this anxiety by talking with your healthcare provider, involving your family in your medical care, or joining a support group.
How to Identify HAE Signs in Someone Else If your child is at risk of this condition because it runs in the family, you may already know the symptoms and might be watching for its effects on your child.When you know someone of any age who has HAE, it's important that you are aware of the danger of breathing problems with this condition. This can start with symptoms such as difficulty swallowing and struggling to speak.Gasping for air is a sign that a person’s airway is blocked. This is an emergency situation requiring immediate medical attention.
Related: How Angioedema Is Diagnosed
Specialist Who Oversees TreatmentsIf you or your child has HAE, it’s important to have medical care from a team of specialists who are familiar with this rare condition.Providers you may need to see if you have HAE include:Gastroenterologist: With HAE, your abdominal and digestive issues can potentially lead to persistent symptoms or complications that require management from a specialist.Immunologist: This specialist physician manages conditions associated with episodes of immune dysfunction.Obstetrician: While there are no increased risks to the fetus or pregnant person from HAE during pregnancy, pregnancy and breastfeeding can affect HAE symptoms. The impact is not consistent for everyone, even from pregnancy to pregnancy for the same person. If you become pregnant, you must discuss your condition with your obstetrician.Primary care provider: When you’re living with a chronic condition, it’s important to see a primary care provider for routine checkups, vaccinations, and care for other health issues that may or may not be related to HAE.Therapist/psychologist: Living with HAE can cause substantial stress, anxiety, and depression. It’s normal to have an emotional response to this chronic and unpredictable illness. Coping can be difficult. Talking through your feelings with a therapist and working on optimizing your mental health can help improve your quality of life. Stress management may also help reduce stress-induced symptoms of HAE. Many different medications can trigger or worsen HAE, including angiotensin converting enzyme (ACE) inhibitors (a type of blood pressure–lowering medication) and estrogen-based therapies. Your pharmacist, as well as any healthcare providers who prescribe medication for you, should be made aware that you have HAE.How to Monitor HAE Symptoms After diagnosis of HAE, an individual management plan will be developed. This will include educating the person and their caregivers on symptoms, triggers, and when and how to use medications to prevent or treat an episode.Keeping a symptom diary is often part of the management plan. Information to record about an attack includes:Its location in the bodyIts durationIts severityMedications taken for the symptomsYour response to the medicationsBeyond the immediate and distressing symptoms, HAE has been associated with a higher-than-average risk of blood clots.Blood clots can develop anywhere in the body and may cause various symptoms, including pain, swelling, and weakness. Getting medical attention for any new symptoms you experience is important, even if they are not your usual HAE symptoms.SummaryHereditary angioedema causes episodes of swelling of the hands and feet, abdominal symptoms, and difficulty speaking, swallowing, and breathing. All of the symptoms occur when HAE causes edema (swelling) in these areas of the body.Symptoms can be unpredictable and distressing, and triggers such as stress, illness, and medical procedures can increase the likelihood of symptoms.If you have a family history of HAE, you must be on the lookout for these symptoms in your child. Swelling of the throat can make it hard to breathe and can be life-threatening.If you’ve already been diagnosed with HAE, you need to be aware of the symptoms and get prompt medical attention if you experience serious symptoms. Medical therapies can help her reduce the frequency and severity of symptoms of HAE and improve your quality of life. Read the original article on Verywell Health.
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