Questions About Living With Hereditary Angioedema

Q: Are there any warning signs that will tell me I am going to have an attack?

A: Attacks are often unpredictable, but you may be able to learn to recognize symptoms that herald the onset of an attack for you. Common early symptoms are sudden mood changes, rash, irritability, aggressiveness, anxiety, extreme fatigue, or a tingling sensation of the skin where the swelling will begin. 1 A hoarse voice or laryngitis, difficulty swallowing, a feeling of tightness, and voice changes may be the first signs of a life-threatening laryngeal attack. People who experience laryngeal symptoms should get emergency help as soon as possible.

Q: If I have hereditary angioedema (HAE), can I continue working, exercising, etc? Should I be on a special diet?

A: There is no evidence at this time to suggest that changes in diet, exercise, or lifestyle will impact the frequency of HAE attacks. However, if you are having frequent attacks, discuss treatment options with your doctor and explore with him/her whether anything in your workplace or lifestyle might be causing stress or otherwise triggering attacks. Find out more about living with HAE.

Q: Can stress cause HAE attacks?

A: Although actual causes of HAE attacks have not been established and vary from patient to patient, some patients report an increased number of attacks during and after stressful situations. By tracking your symptoms carefully and keeping a journal, you can discover whether stress is a trigger for you. 6

Q: Where can I find out about support groups for HAE families?

A: Although HAE is a rare disorder, there are support groups available to families with HAE. A support group is available through the U.S. Hereditary Angioedema Association (HAEA). Other groups can be found here.

Q: Are there specific medications that can trigger HAE attacks?

A: Patient histories reveal that certain medications and contraceptives containing estrogen may trigger HAE attacks or increase attack frequency. In addition, blood pressure medications known as ACE (short for angiotensin-converting enzyme) inhibitors can produce attacks. For this reason, doctors usually prescribe one of the many alternative high blood pressure medications for HAE patients. Additionally, people may have individual sensitivities to various medications. 6

Q: How should I prepare for a trip out of the country?

A: Each country has its own laws regarding medications used to treat HAE. It is a good idea to research any medications that may be available and understand how you can obtain those medications while visiting your destination country; also, talk to your doctor about your options. The US Hereditary Angioedema Association can be a useful resource in this matter. It's also a good idea to bring along an HAE diagnosis letter from your doctor (Click here to see sample letters) as well as an ID card. If you will be traveling to a country where English may not be understood, you may want to have your letter of diagnosis translated into the language of that country.

If you cannot readily transport your current medication with you, ask your doctor to write a prescription for the appropriate HAE medication for the country you are visiting.

You may contact patient organizations in the country you are visiting to learn more about the resources available in that country. The HAEi (International Patient Organization for C1 Inhibitor Deficiencies) Web site maintains a list of approved treatments by country.