Hereditary Angioedema’s Affect On Patients

January 12, 2022 — Hereditary Angioedema (HAE) is a rare genetic condition that causes unexpected swelling, and it can happen in different parts of the body. The areas of the body most commonly affected include hands, feet, eyelids, lips, or genital areas.**

Symptoms and Causes

Oftentimes, symptoms first show during childhood and worsen as you age. People don’t always know they have HAE or that it is the cause of their swelling until they are adults. The location and severity of swelling attacks can vary widely and be impossible to predict. Swelling can come and go as well as move to different areas during the same outbreak. These episodes typically go away on their own but can be life-threatening if swelling were to happen in certain areas like the throat which would restrict airflow.  

There are a few types of HAE, but one is caused by an imbalance of a specific protein called C1 Inhibitor, which acts as an anti-inflammatory in the body. When this protein is not balanced properly, it can cause tiny blood vessels to push fluid into nearby areas of the body, causing swelling. If the swelling occurs inside of the body, such as the lining of the stomach or intestines, the symptoms can manifest in the form of vomiting, diarrhea, or extreme pain. Some patients have even reported having the following warning symptoms several hours prior to a swelling attack: non-itchy rash, skin tingling, skin tightness, fatigue, irritability, anxiety, or sudden mood changes.

HAE’s Impact

The average yearly cost of care for HAE can reach over $400,000 per person, with medication making up more than 97% of that total, according to one study. Another study showed that HAE could cost as much as $50,000 out-of-pocket annually for certain medications. 

For someone living with HAE, life could look completely normal one day, and the next, an episode could occur and cause significant pain from swelling to even a life-threatening emergency. The expenses alone could result in significant financial strain or financial poverty overnight. This, in turn, could affect a patient’s mental health as the stress of medical bills, physical symptoms, and future uncertainty overwhelm them.

Financial Assistance for HAE

We, at Accessia Health, have been supporting patients with HAE since 2012. Our established Hereditary Angioedema Fund provides financial assistance with copays, premiums, travel, and other medical expenses. All of this helps to alleviate stress and worry for patients with HAE.

For more information, or to see if you qualify for assistance, check out our prescreening tool and apply today. You can also call us at 1-800-366-7741* or click here to donate.


*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything that you may have read in this blog, on this website or any linked materials contained within. Thank You.

**It is important to remember that swelling from Hereditary Angioedema is NOT the same as swelling due to allergies and CANNOT be treated as an allergic reaction. Neither epinephrine, antihistamines, nor corticosteroids are effective in treating HAE symptoms. To learn more click, here.