Living Better with HAE

If you or someone you love has HAE, you may be concerned about living a full and active life. Rest assured that most people with HAE do indeed live successful and happy lives.

Knowledge is power. And understanding how HAE may impact your life at various stages can help empower you to live a full life with HAE.

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

You can also see questions about daily life with HAE by clicking here.

Childhood
In families affected by HAE, all children should be tested for C4 and C1 levels after the age of 1. (Before this age, tests aren’t very accurate.) Even if a child has no symptoms, an advance diagnosis may help you be prepared for the possibility of a future attack — if your child has inherited HAE. Alternatively, the tests may set your mind at rest, if they are normal.

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 your child’s changes in mood or behavior that may herald the onset of an attack. As your child grows, help him or her identify and name warning (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 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 teen years. Consequently, 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 teen years progress.

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

During the teen years, the ultimate responsibility for your 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 your child transition to the college scene or the working world.

Adulthood
Most patients are diagnosed with HAE by the time they are 20 years old. 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.

Moreover, changes in hormonal levels have been associated with increased HAE attacks in women. Consequently, many young women report experiencing changes in HAE attack frequency and severity, when using contraceptives that contain estrogen. Therefore, doctors typically recommend that women with HAE use only contraceptives that do not include estrogen. Furthermore, attacks may occur during the same point in the menstrual cycle.

Other medications may also impact HAE attacks. Before starting a new prescription, be sure to discuss your options with a specialist in HAE.

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 in the patterns of their attacks after childbirth.

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