Create a care plan
HAE is a dynamic, chronic condition and attacks of angioedema can vary in frequency and severity over your lifetime. This variability makes it important for you to be evaluated regularly to ensure that therapy is appropriate, used correctly, and that side effects of therapies are being minimized.
Step 3. My Care Plan
Here are a few details about what is typically included in a care plan:
Treatment of acute HAE attacks
The aim of acute treatment, also referred to as “on-demand therapy”, is to minimize the symptoms of HAE attacks, including potentially fatal upper airway swelling (for example, the throat, tongue, nasal cavities). This can help to reduce the severity of the attack.
- All attacks of angioedema involving the upper airway are medical emergencies and must be treated immediately.
- Consider being assessed in the emergency department.
- Attacks should be treated as early as possible – treatment is more efficacious when attacks are treated early.
- You should carry your on‑demand treatment at all times.
- Remember to tell your physician about any side effects you may experience when taking your medicine.
Long-term prophylaxis in HAE
Long-term prophylaxis (LTP) refers to taking medication on an ongoing, regular basis in order to prevent the swelling associated with HAE, which can help reduce the risk of getting an attack.
- Be aware that starting LTP does not mean that you will no longer have attacks. Breakthrough attacks which occur can still be fatal.
- You must have a plan to treat attacks on-demand despite being on LTP therapy.
- You must be monitored to ensure that LTP is efficacious and that side effects are being recorded.
Self-administration refers to treatment outside of a healthcare facility either by yourself or by a trained caregiver.
- Self-administration is convenient and allows for early treatment.
- You should be trained on self-administration of HAE-specific therapies if you are a suitable candidate.
- If you cannot self-administer therapy, work with your healthcare team to create a plan to ensure timely access to all appropriate therapies.
- With self-administered therapies, you need to be regularly monitored to ensure appropriate control of your symptoms, and competency with administration.
Because HAE can affect people so differently, it is important to work closely with your healthcare team to create a care plan that is right for you.
Download a PDF template of an HAE care plan to help guide the discussion
with your HAE specialist.
myHAE is an app designed to help you keep track of your experience with HAE. You can even create a detailed report to show your healthcare team how your HAE is really affecting you.