There is no “one size fits all” treatment plan for hereditary angioedema (HAE). Every patient is different - from the frequency of attacks to the severity and location where they occur. That’s why it’s very important that you work closely with your doctor to create a treatment plan that’s personalized for your lifestyle and your HAE.
If you don’t have a doctor who specializes in HAE, contact HAEA’s Patient Services Team, who will connect you to an HAE treating physician near you.
There are two main types of treatment plans for HAE:
When you are discussing treatment options with your doctor, keep in mind the US HAEA Medical Advisory Board’s 2013 treatment guidelines:
There are currently three types of on-demand HAE treatments approved by the Food and Drug Administration (FDA) to treat sudden HAE attacks:
In addition to developing an on-demand treatment plan, you and your doctor should also work together to manage other ailments that may occur during a sudden HAE attack, such as dehydration, which can result from vomiting during a stomach attack.
For some patients, on-demand treatment alone is not enough to properly manage their HAE, so they may seek preventative treatment as another option. Preventative treatment involves taking medicine on a regular basis to lessen the severity and frequency of sudden HAE attacks. Preventative treatment may also be given to HAE patients before an event that may trigger an HAE attack, such as a medical or dental procedure.
There are currently two types of preventative treatments approved by the FDA to reduce frequency of sudden HAE attacks:
Many drug companies offer special programs to patients who need medication but cannot afford it. If you are struggling to receive treatment due to financial barriers or insurance issues, check with your HAE treatment’s drug manufacturer or contact HAEA's Patient Services for additional information.