The long-term outlook: What to expect as you age with HAE
Fact-checked by If you’ve been diagnosed with hereditary angioedema (HAE), you may wonder how your symptoms, treatment needs, and overall health could change over time. Understanding what to expect can help you feel more prepared to manage your condition and make informed decisions about your care.
As with many chronic conditions, people often experience evolving symptoms as they age. The good news is that treatments have advanced significantly in recent years, and the HAE long-term outlook continues to improve.
As researchers learn more about HAE and develop new therapies, people with the condition have more options than ever to help prevent attacks, manage symptoms, and maintain their quality of life.
How the burden of HAE has changed over time
HAE can be stressful because attacks are often unpredictable and disruptive. It may be reassuring to know that research suggests angioedema life expectancy is similar to that of people without the condition.
As researchers have gained a better understanding of HAE, treatment approaches have become more proactive and less burdensome. Today’s strategies focus on preventing attacks whenever possible and helping you treat symptoms quickly when they occur.
HAE treatment guidelines now recommend a combination approach that may include:
- Long-term prophylaxis: These preventive medications help reduce the likelihood of HAE attacks over time. Older treatments were not developed specifically for HAE and often caused unwanted side effects. Many newer preventive therapies target the proteins involved in HAE swelling and are generally more effective and better tolerated.
- Short-term prophylaxis: These medications may be used before situations that could trigger an attack, such as dental procedures or surgery. Like newer therapies used for long-term prophylaxis, newer short-term prophylaxis options are designed to be more targeted and may cause fewer side effects than older treatments.
- On-demand treatments: Also called rescue therapies, these medications are used shortly after an attack begins. Current guidelines recommend that all people with HAE, even those without symptoms, have access to on-demand medications and learn how to self-administer these treatments. Treating an attack quickly may reduce symptoms and help you maintain your independence.
These treatment strategies can be highly effective at managing HAE symptoms. However, each person responds differently to treatment. If you continue to experience attacks with routine prophylaxis or find your current management plan difficult to maintain, talk with your healthcare team about whether another treatment option may better fit your needs.
Monitoring for long-term complications
If you have HAE, especially if your condition has been difficult to control, it is important to stay aware of potential long-term complications of swelling and other health conditions.
Although HAE attacks are temporary, repeated swelling may have lasting effects. Some people report ongoing fatigue or gastrointestinal symptoms between attacks. In addition, the uncertainty of when an attack might occur can take an emotional toll, even if attacks are infrequent.
If symptoms between attacks or concerns about future attacks are affecting your quality of life, consider discussing them with your healthcare team. Adjusting your treatment plan or seeking mental health support may help.
Research suggests that you may also be more likely to develop certain chronic health conditions, including:
- high blood pressure
- high levels of certain fat molecules
- autoimmune diseases
- thromboembolic conditions, which involve abnormal blood clotting
Some older preventive treatments, particularly attenuated androgens, which are hormone-based medications similar to testosterone, may contribute to these risks. As you age, your healthcare provider may recommend regular screenings, lifestyle changes, or medications to help manage these conditions.
The future of gene therapy and beyond
The future of HAE treatment is promising. Oral on-demand medications that may offer a more convenient alternative to injections have recently become available, and researchers are studying several new therapies in clinical trials.
Scientists believe that HAE symptoms are driven by excess activity of a protein called bradykinin. Bradykinin causes blood vessels to become more permeable, allowing fluid to leak into surrounding tissues and trigger swelling. People with HAE produce too much bradykinin.
Current treatments often work by blocking bradykinin or its effects after it has been produced. Researchers are now exploring ways to reduce bradykinin production before swelling occurs.
Two approaches currently being studied include:
- RNA-based therapies: These treatments interfere with the process your cells use to produce proteins, helping reduce excess bradykinin production. One therapy using this mechanism of action is already approved for HAE, but more are being explored.
- Gene therapy: This approach aims to address the underlying genetic cause of HAE by delivering a functional version of the affected gene to your cells.
As researchers continue to learn more about HAE, treatment options are likely to become increasingly effective, convenient, and personalized.
Although HAE is a lifelong condition, many people are able to successfully manage their symptoms with the right treatment plan and support. Regular conversations with your healthcare team can help you stay informed about new treatment options and ensure your care continues to meet your needs as you age.
Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
