Ways to find help and support for HAE

Hereditary angioedema (HAE) is a rare genetic disorder that causes episodes of painful swelling. Often referred to as HAE attacks, these episodes can affect different areas of the body, including the hands and feet, the face, the genitals, and the GI tract. Attacks that cause swelling in the airways are not common, but these can be life threatening when they occur.

For most people with HAE, symptoms first appear in childhood and worsen with the onset of puberty.

Treatment for HAE

Without treatment, attacks can last for several days and can occur several times per month. There is no cure for HAE, and treatment is a lifelong, ongoing process.

Treatment typically requires two approaches. One is preventive/prophylactic therapies that a person takes on an ongoing basis to prevent attacks from occurring. The second is acute/on-demand therapies that are taken when an attack occurs.

Taking steps to avoid things that trigger HAE attacks—stress, injury, infections, hormone fluctuations, medical procedures like dental work—is also an important aspect of treatment. However, not every attack will have an identifiable trigger.

It goes without saying that HAE can be a distressing condition to live with, and the process of diagnosis and figuring out how to live with and manage the condition can feel overwhelming. It helps to know where to find information about HAE, HAE treatments, and support for people living with HAE.

Resources for people with HAE

If you or a loved one is living with HAE, these websites are worth a visit:

• US Hereditary Angioedema Association (HAEA). A nonprofit organization focused on patient education, the HAEA website also features a “Find a Physician” tool and information on HAE clinical trials.
• yourHAEstory. This site includes treatment guidelines, an emergency toolkit, a physician finder, doctor discussion guide, podcasts, and ways to connect with other people living with HAE.
• Genetic and Rare Diseases Information Center (GARD). This organization provides information on the diagnostic journey, a tool to find medical centers that specialize in HAE care, and information on the genetics of HAE.

Building your support network

Stated above, living with HAE can be distressing, for multiple reasons. While living with HAE is a different experience for everyone, just about everyone with this disorder can benefit from having people they can rely on.

A support network can include:

• Your healthcare team. Your healthcare providers will be your best source of information about your diagnosis and your treatment options. Your healthcare providers are also people to talk to if you are struggling with something or have concerns about your health.
• Your friends and loved ones. Friends and loved ones are a valuable source of support when living with a chronic condition. Support can be practical things, like help with groceries or taking care of a pet when you’re recovering from a HAE attack. Support can also be emotional support, like someone to talk to when you need to feel less stressed (after all, stress is a potential HAE trigger).
• Support groups. If possible, consider connecting with other people who are affected by HAE, including people with the condition or caregivers. This can be a group that meets online or in person. It can help to talk to other people who know what the experience of HAE is like.

Also consider writing things down—notes on how you are feeling day to day, triggers and symptoms, questions for your healthcare providers, things that are on your mind. Keeping a journal can help you identify the type of support you need.