Living with hereditary angioedema (HAE) can be challenging. You may have to pay close attention to potential triggers or follow a strict medication regimen in order to avoid attacks.
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.
Some common challenges people with HAE face include:
Getting an accurate diagnosis
Having a rare illness that few people have heard of
Pregnant women with HAE don’t have a higher risk of infertility or miscarriage. And research shows that most women with HAE can have normal deliveries.
The impact of HAE on pregnancy varies. Also, the fluctuation in hormones associated with puberty, menses, contraceptive use and menopause can impact the severity of HAE attacks.
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.
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.
Traveling can require extra planning when you’re dealing with a chronic disease such as HAE. Some things you can do to prepare include:
Fill all your prescriptions before you leave for a trip.
Pack your medications and keep them close by.
Carry your medication with you if you fly. You may need a physician’s letter to authorize you to bring medications on a plane. In rare instances, the Transportation Security Administration officers may ask for this note.
Set up your patient portal 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.
Research and locate the nearest emergency room in the city you’re visiting. Most doctors’ offices now offer televisits, and you may be able to consult with your doctor even while you’re traveling.
HAE attacks can be hard to predict and can last for days, which creates a significant impact for people with HAE on everything from school to work to time with family and friends. A recent review reported that the symptoms of edema, pain, fatigue, nausea, and vomiting can result in time missed from work or school, which can cause missed opportunities for educational or career advancement. The review also said the psychological burden can have a wear and tear on relationships and cause anxiety and depression.
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, so you know your rights and your family’s rights when it comes to job protection and insurance coverage.
If you’re a parent with HAE, it’s important to take care of yourself and keep your stress levels at bay. Eating healthy foods, exercising daily, and getting enough sleep are vital for your well-being.
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 your child experiences 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.
Some steps may improve your quality of life:
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 (HAEA) 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 destress.
Find a patient advocate. The HAEA 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. Cost per attack can range from $13,000 to $15,000. Annual costs for quality-adjusted life-year are estimated to be from about $480,000 to $690,000.
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.
Hereditary angioedema, a rare illness, and its unpredictable attacks can make all areas of life challenging, whether you are trying to start a family or pursue a career.
HAE can make travelling difficult, but if you take some precautions before a trip, such as having your prescriptions ready and setting up virtual communication with your doctor through a patient portal, you will be more prepared.
HAE attacks can last for days and even require hospitalization, which can impact your school or job responsibilities.
There are steps you can take to help you live a normal life with the disease, such as creating a support system, getting a medical identification card, and having a positive attitude.
