Living With Hereditary Angioedema

If you or someone you love has hereditary angioedema (HAE), you may be concerned about you or that person being able to live a full and active life. Rest assured that most people with HAE successfully manage the condition. Remember that knowledge is power, and that understanding how HAE may impact your life at various stages can help empower you to live a full life.

HAE is a hereditary disease that occurs equally in men and women. As an inherited disorder, it is a lifelong disease. However, the severity of the disease as well as the frequency, type, and timing of HAE attacks vary widely between individuals. Furthermore, the pattern of attacks can be inconsistent within any given person, such as having greater or fewer episodes during one life stage compared to another.

Questions? See if they have already been answered in Questions on Living With HAE.

Childhood

In families affected by HAE, all children should be tested for C4 (another protein that regulates the immune system and is frequently responsible for type II HAE) and C1 levels after age 1. (Before this age, tests aren’t very accurate.) Even if a child has no symptoms, an advance diagnosis may help you prepare for a possible future attack.

Physicians report that their youngest patients who have HAE attacks tend to be preschoolers, rather than infants or toddlers. However, many people do not experience attacks until their teen years or later.

If your young child does have attacks, keep in mind that children usually have more difficulty than adults in conveying feelings of discomfort, pain, and other medical symptoms. Be alert to the changes in your child’s mood or behavior that may herald the onset of an attack. As your child grows, help him or her identify and name (prodromal) symptoms and personal triggers.

If your child has HAE, inform healthcare professionals and first responders at day care, school, summer camp, and after-school programs. It is a good idea to create a patient information card, that includes key family and medical contact numbers and instructions describing steps to be taken in the event of an HAE emergency. In addition, a letter (Click here to see sample letters) from your child’s physician to other healthcare professionals should be available wherever your child plays or works.

Teenage years

Hormonal and emotional changes increase during the teenage years. Many people report the onset of their first HAE attacks during puberty. Moreover, numerous people report changes in the location, severity, and frequency of attacks as the teenage years progress.

As your child develops more independence and spends more time away from home, it becomes increasingly important for him or her to carry personal medical information. An ID bracelet or chain, a card in a wallet or purse, and an understanding of HAE among your child’s inner circle can discreetly help keep your child safe at a time when a desire to fit in becomes important.

During the teen years, the ultimate responsibility for a child’s health should shift gradually from parent to child. Your child’s firm grasp of personal triggers, warning symptoms, and treatment options will help him or her transition to the college scene or the working world.

Adulthood

Living with HAE means understanding how your specific symptoms trigger attacks and how you and your physician can best manage HAE.

Although no definitive causes for HAE attacks have been established, attacks may be triggered by emotional or physical stress. Surgical procedures, even mild dental work, can trigger attacks in some people.

Changes in hormonal levels have been associated with increased HAE attacks in women. Many young women report changes in HAE attack frequency and severity when using contraceptives that contain estrogen. Doctors typically recommend that women with HAE use only contraceptives that do not include estrogen.

Other medications may also impact HAE attacks. Before starting a new prescription, be sure to discuss your options with a specialist in HAE. If you have trouble locating a specialist, you may want to contact the Canadian Hereditary Angioedema Network of physicians. This organization maintains a list of doctors across the country who treat people living with hereditary angioedema.

Pregnancy

Natural hormonal changes can also cause changes to patterns of HAE attacks. Some pregnant women notice an increase in frequency of attacks during pregnancy. For others, the number and severity of attacks fall during pregnancy. For many women, the frequency of attacks returns to normal after they give birth, while others experience a permanent change after childbirth.

Menopause

Menopause is a time of physiological change in which hormonal levels are altered. If you are considering estrogen replacement therapy during this change of life, discuss your treatment options with your HAE specialist.

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FAQs about treating HAE

Questions about treating HAE? You’re not alone. Read the questions of other people learning how to treat HAE and see how they were answered. Find out more in Questions on Treating HAE.

Treating HAE

As a person with HAE, you need to recognize the importance of becoming your own advocate, recognizing and monitoring symptoms, learning about treatment, and working with your doctor. Learn more about treating HAE.