Living With Hereditary Angioedema

Living with a rare medical condition like hereditary angioedema, or HAE, can feel very overwhelming. Caregivers also face big daily challenges while supporting their loved ones living with the condition.

HAE is a rare genetic disorder. It causes sudden attacks of severe swelling. These attacks affect the hands, feet, stomach, face, and throat. Throat swelling is dangerous because it can block your airway, making it difficult to breathe. This requires immediate emergency medical care.¹

HAE attacks happen due to a low amount or non-functioning blood protein called C1-esterase inhibitor. This specific protein helps control swelling in your body by controlling the levels of another protein called bradykinin. Too much bradykinin leads to swelling that can last for several days if left untreated. HAE attacks are often unpredictable and can happen at any time.¹

Coping with an HAE diagnosis

Getting an HAE diagnosis can bring many heavy emotions. You might feel fear, anger, sadness, or confusion. These feelings are completely normal.²

Finding a strong support network can help you cope. You can talk to family members, friends, counselors, or others living with HAE. Writing down your feelings in a journal can also help you process any new emotions and lower stress. Lowering stress is helpful because stress can trigger HAE attacks.^1,2

Mental health experts can also support your emotional well-being. Caregivers also need to protect their own mental health. Taking breaks can prevent caregiver burnout.²

Staying active with HAE

Physical activity is good for your overall health. Regular exercise can help reduce your daily stress levels. However, intense physical exercise can trigger an HAE attack. You should also avoid contact sports that can cause frequent injuries.²

Good options include walking, swimming, and gentle yoga. Take frequent breaks during your workouts to stay safe.²

Always speak with your doctor before starting a new exercise routine. Track your activities to see if they cause any swelling.²

Navigating work and school with HAE

HAE attacks can cause you to miss school or work. Advanced planning can help you manage these absences.²

Students can get a 504 plan at school. They can also get an Individualized Education Program (IEP). These plans provide important school accommodations for students. For example, accommodations may include extra time for tests or remote learning.³

Adults can request workplace accommodations under federal law. Workplace accommodations might include things like a modified work schedule following an HAE attack. Inform your boss about your condition if you feel comfortable.⁴

Managing the financial impact of HAE

HAE treatments can be very expensive for families. In addition, the cost of unnecessary surgeries can add up. Overall, the annual cost of HAE care can be quite high. These high costs can place a heavy burden on you and your family.⁵

Luckily, financial aid options exist to help with costs. Patient advocates can help you find medical reimbursement plans.³

Many drug companies offer co-pay assistance to lower prices. You can also look for non-profit disease grants. Do not let costs stop you from getting proper care. Speak to your medical team about financial assistance programs.³

Tips for safe travel with HAE

You can still travel safely when you have HAE.2 You just need to plan ahead before your trip.^2,6

When you travel, try to follow these steps:^2,6

• Always carry at least 2 doses of your on-demand medicine and bring enough preventative medication.
• Keep these medicines in your carry-on bag at all times.
• Do not place them in checked luggage on flights.
• Ask your doctor for a formal travel letter.
• Locate the nearest hospital at your destination before you leave.
• Wear a medical alert bracelet during travel.
• Bring a written prescription in case you need extra refills.
• Share your travel plans with your close travel companions.

Managing sexual health and intimacy with HAE

HAE can also affect your sexual health and intimate relationships. Physical friction during sexual activity can trigger swelling attacks. These attacks often cause swelling in the genitals or stomach.^2,7

Pain and swelling can cause anxiety or a loss of sexual desire. Talk openly with your partner about your fears and physical needs. You can explore non-sexual ways to show affection and stay close.^2,7

Hormones can also play a major role in HAE attacks. Estrogen in birth control pills can make attacks worse or more frequent. Speak to your doctor about progestin-only or non-hormonal birth control options. Always keep your on-demand medicine nearby during intimate moments.^2,7

Finding balance while living with HAE

Living well with HAE requires careful preparation and care. Lean on your support system when you need extra help. Work closely with an HAE specialist to build a treatment plan that works with your lifestyle. You can take control of your health and live fully.²