All about living a full, active life with HAE

In families affected by HAE, all children should have their C1-INH levels tested after age 1. Even if a child has no symptoms, an early diagnosis may help you prepare for future attacks.

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

Children usually have difficulty conveying discomfort, so help them “name” what they’re feeling and try to see if anything triggered their attacks.

Inform the healthcare professionals at your child’s day care, school, summer camp, and after-school programs and make sure each has a letter from your child’s physician on file. It’s also a good idea to create an HAE Identification Card that includes key family and medical contact numbers, along with directions for what staff should do in case of an HAE emergency.

Hormonal and emotional changes increase during the teen years, and many people report their first HAE attack during puberty.

As teens develop more independence, the responsibility for their health should gradually shift from you to them. This will help them transition to the college scene or the working world.

Teens should also carry an HAE Identification Card in their wallet/purse (or wear a medical ID bracelet) in case of an emergency. Their inner circle of friends should have an understanding of HAE to help if you’re not available.

With all of the challenges that come with adulthood, people who live hectic lives may be at increased risk for attacks triggered by emotional or physical stress. Try to limit these factors as best as you can. And if you have upcoming surgery or dental work, tell the doctor who treats your HAE beforehand, as these procedures can trigger HAE attacks.

Adults may also have other conditions that require medications, such as high blood pressure. Some prescriptions can impact HAE, so always let your doctor know before starting or changing any therapy.

Many adults find online support groups helpful, particularly because this is such a rare disease, and finding a nearby friend in a similar situation isn’t always easy.

Changes in hormone 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.

Pregnancy

Natural hormonal changes may increase or decrease HAE attacks. For many women, the frequency of attacks worsens during pregnancy, while for others symptoms improve.

Menopause

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