And when attacks do occur, they may make participating in work, school, or social events difficult. While the average untreated attack lasts between 24 and 72 hours, some episodes may persist for more than a week. (1)
Common Hereditary Angioedema (HAE) Challenges
Some common challenges people with HAE face include:
Getting an accurate diagnosisHaving a rare illness that few people have heard ofFeeling isolated, lonely, or depressedFinding a doctor who understands and treats HAEExperiencing unpredictable, debilitating attacksParticipating in everyday activities (2)
But about one-third of pregnant women report that their HAE symptoms become worse during pregnancy, while one-third don’t notice any changes, and one-third report improved symptoms. (2) Because HAE is a genetic disorder, there’s a possibility that you will pass it on to your children. If you have HAE, your child has a 50 percent chance of inheriting the disease. (2) If you’re pregnant and have HAE, you’ll have to discuss treatment options with your doctor. Certain medicines, such as anabolic steroids, aren’t safe for expecting mothers to take. But newer FDA-approved therapies may be an option for pregnant and breast-feeding women. (3) RELATED: 12 Tips to Reduce Stress During Pregnancy Be sure to get all your prescriptions filled before you leave for a trip. Pack your medications and keep them close by. If you’re traveling on a plane, make sure you carry your medication on the plane with you. You might want to bring a physician’s letter that authorizes you to bring the medication on the plane. In rare instances, the Transportation Security Administration officers may ask for this note. Make sure you have your patient portal set up with your doctor’s office so that you’ll have access to your medical records via an app on your phone even when you are away from home. Experts say it’s also a good idea to research and locate the nearest emergency room in the city you’re visiting. Since the COVID-19 pandemic began, most doctors’ offices now offer televisits, and you may be able to consult with your doctor even while you’re traveling. (4) A 2007 survey of people with HAE reported these findings:
57 percent reported that their career advancement was hindered100 percent said that their educational advancement had been hindered69 percent felt that they couldn’t consider certain types of jobs because of their disease (5)
You may want to let your boss and coworkers know about your condition. Additionally, the human resources department at your company may be a good resource. It may also be helpful to review the guidelines of the Family and Medical Leave Act (PDF), so you know your rights and your family’s rights when it comes to job protection and insurance coverage. (5) RELATED: Here’s How Stress and Inflammation Are Linked If your child also has HAE, you can help him or her learn to recognize symptoms and take medications regularly. It’s also a good idea to create an individualized treatment plan with your son or daughter’s doctor. Anyone who cares for your child should know your emergency plan, in case they experience an HAE attack. You can prepare a concise document that explains this strategy. Kids with HAE often benefit from having an advocate. Be sure to learn as much as you can about HAE and your child’s options. And educate teachers, coaches, and friends about the disease. Most importantly, try to maintain a positive attitude when discussing your child’s disease. Be optimistic, and encourage them to live a full, active life. (6)
Journal. Writing down your feelings and emotions can help you cope with the uncertainty of HAE. As a bonus, keeping track of your attacks helps you identify potential triggers that may spark your episodes.Create a support system. Talking to family members and friends about your disease can be therapeutic. Because HAE is so rare, many people have trouble finding others who are dealing with the same illness. The U.S. Hereditary Angioedema Association has a free membership program that allows people with HAE and their families to connect in various ways.Lower stress. Stress can be a trigger for HAE attacks, so it’s important to figure out how to manage it. Yoga, meditation, and exercise are all great ways to de-stress.Find a patient advocate. The U.S. Hereditary Angioedema Association has a team of patient advocates that can help you with a variety of services, including finding a doctor, connecting with others, and accessing reimbursement for your treatments.Get help if you experience depression. Living with a chronic illness like HAE can cause you to feel scared, anxious, lonely, and depressed. Talk to your doctor if these feelings become frequent or serious.Request an ID card. You can order or make your own ID card for yourself and family members. The card should include personal and medical information that may be useful for others to know if you have an attack.Seek financial assistance. HAE therapies can be extremely expensive. In 2012, the annual cost of the medicine Cinryze for routine prevention of HAE attacks was about $487,000 per person. Some organizations, such as the Assistance Fund, provide financial aid to help people with chronic or serious illnesses deal with the cost of treatment. (7)
Your experience with HAE will be a unique journey. People with HAE report different worries, symptoms, and challenges. While HAE won’t go away on its own, there are many actions you can implement to take charge of your life. Having a positive attitude, following a doctor-approved treatment plan, and creating a support system are small steps that can help you live well with HAE. (7) RELATED: Why Being Fit Helps You Manage Chronic Diseases
