OnePath | Learn About My Condition: Hereditary angioedema (HAE)

Hereditary angioedema

What is HAE?

Hereditary angioedema (HAE) is a rare genetic disease. HAE affects 1 in 50,000 people worldwide. Most people with HAE don’t produce enough of a protein called C1 esterase inhibitor (C1-INH), or the protein doesn’t work the way it should.

When there is a C1-INH deficiency or it isn’t working properly, a cascade of events occurs. Part of this cascade is increased activity of another protein called plasma kallikrein. Increased kallikrein activity leads to excess bradykinin production, which causes the swelling of an HAE attack.

HAE symptoms

HAE can cause painful and disabling attacks in parts of the body. Common symptoms can include swelling of the skin (face, hands, feet, stomach, genitals, throat*).

*An HAE attack that affects the throat can be life-threatening. It can put a person at risk of suffocation. If you have an attack affecting the throat, you should seek emergency care right away. Attacks can happen without warning or an obvious trigger and can last for days if untreated.

Living with HAE

HAE attacks can often be mistaken for allergic reactions. If you have HAE, you should share your medical history with caregivers and friends in case of emergency.

Some common triggers of HAE attacks are:

  • Emotional stress
  • Hormonal influences
  • Minor trauma
  • Surgery
  • Infection
  • Dental procedure

People with HAE have also reported swelling in the extremities following:

  • Using scissors
  • Hammering
  • Shoveling
  • Other physical activities

The above information is not intended to be medical advice. For medical advice, always speak with your healthcare provider.

Finding support* from Takeda offers information for people living with HAE. Topics include HAE symptoms, triggers, diagnosis, management, and more. You’ll also find downloadable tools and guides, patient videos, and links to support resources.

National Organization for Rare Disorders (NORD) is a rare disease umbrella organization that provides advocacy, research, education, and patient services in the US. See how they help and find out how you can get involved.

American Academy of Allergy, Asthma & Immunology (AAAAI)
Check out current research and connect with experts. See what today’s allergists, immunologists, and other healthcare professionals are talking about.

American College of Allergy, Asthma & Immunology (ACAAI)
Explore the resources available through this wide network of healthcare professionals dedicated to improving the quality of patient care.

Hereditary Angioedema Association (HAEA) is a non-profit patient advocacy organization founded and staffed by HAE patients and caregivers. HAEA provides a wide range of HAE resources and personalized patient support.

*The above links are provided as a resource. This is not an endorsement, and Takeda has no control over the content of any website not owned by Takeda.

Get health education support from OnePath

OnePath offers health education support from a Clinical Educator (CE). CEs are trained nursing professionals. They can help answer your questions about HAE and your prescribed Takeda treatment.

Find OnePath tools to help you during treatment

Track how you or your loved one is feeling with our convenient Health Events Log in the OnePath App or Portal.

Frequently asked questions

Call your OnePath Patient Support Manager (PSM) if you feel you need more training on administering your treatment. To connect with your PSM, call Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660.

OnePath specialists are here to help answer questions about your condition and your Takeda treatment plan. Your Patient Support Manager (PSM) can connect you with one of these specialists. Call us Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660. You should also speak with your healthcare provider if you have specific questions about your health.

If you’ll be traveling with your Takeda medication, your dedicated Patient Support Manager (PSM) can help you prepare. Call your PSM as early as possible, at least 2-3 weeks before your trip. Your PSM can:

  • Put you in touch with your specialty pharmacy to discuss your travel plans. Your SP can:
    • Work with you to have extra medication shipped to you before you travel
    • Have your medication shipped to your destination
    • Help locate a site of care if your treatment must be given to you by a trained healthcare provider

Below you’ll find more tips you may want to consider when planning to travel with your medication:

  • Tell your healthcare provider about your plans. Follow any instructions they may provide you
  • Make a list of hospitals along your travel route and near your destination. Be sure to include their contact information
  • Always keep your treatment and supplies with you (if applicable). This includes storing these items in your carry-on luggage. That way, you’ll be able to use your items at any time on the way to your destination. Also, they’ll be better protected against temperature changes, rough handling, or loss
  • Pack extra medication just in case you experience a travel delay
  • If you’ll be flying, call your airline before the trip. Ask if it would be possible to keep your medication refrigerated during your flight, if applicable
  • Call the Transportation Security Administration (TSA) at least 72 hours before traveling. It can let you know what to expect at security checkpoints and if there are any special instructions you’ll need to follow. You can call the TSA toll-free at 1-866-289-9673 or visit them online here
  • When going through security, carry a copy of a travel letter describing your condition and the need for your medication
  • Always wear a medical ID bracelet or carry a medical ID card with you
  • Make sure to have all medication, supplies, and medical devices clearly labeled

If you have questions, speak with your Patient Support Manager (PSM). To connect with your PSM, call us Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660.