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 sense their onset. You will learn to recognize symptoms that herald an attack for you. Common symptoms are sudden mood changes, rash, irritability, aggressiveness, anxiety, extreme fatigue, or a tingling sensation of the skin where the swelling will begin. A hoarse voice or laryngitis, difficulty in swallowing, a feeling of tightness, and voice changes may be the first signs of a life-threatening laryngeal. attack. People who experience these 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: Stress can aggravate HAE and lead to more frequent HAE attacks. If you are having frequent attacks, you and your doctor may want to discuss treatment options.

There is no evidence at this time to suggest that changes in diet, exercise, or lifestyle will impact the frequency of HAE attacks. Find out more about living with HAE.

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 Canadian Hereditary Angioedema Patient Association (HAE Canada). Other groups can be found here.

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 or not stress is a trigger for you.

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

A: Patient histories reveal that 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. Additionally, people may have individual sensitivities to various medications.

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

A: Each country has its own laws regarding medications available to treat HAE. It is a good idea to research any medications that may be available and understand how you may obtain those medications while visiting your destination country; also, talk to your doctor about your options. 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 a patient information card, that includes key medical and contact information. If you are going to 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.