Jake Conaway learned how dangerous hereditary angioedema (HAE) can be when he was just seven years old.
That’s when his father died because of the rare genetic condition, which occurs in about 1 in 10,000 to 1 in 50,000 people. Shortly thereafter, Jake experienced his first HAE attack when his hand swelled for no obvious reason. “There’s a little bit of Dad in me,” little Jake told his mom as he showed her the swelling.
Now, Jake is 20 and preparing to attend college.
But it wasn’t always an easy road for Jake and his mother, Tracy Richards, both residents of Pasco, Washington. In the past couple of years, Jake has been hospitalized more than 50 times due to the unpredictable swelling of HAE.
People living with HAE have an inherited deficiency or dysfunction of the C1 inhibitor protein, which is important for controlling inflammation.
Attack episodes can involve swelling in any area of the body, but commonly affect arms and legs, the face and throat area, and the abdomen. Stomach attacks can cause excruciating abdominal pain, nausea, and vomiting. Airway attacks can restrict breathing and lead to death. Most HAE attacks last for about three to four days, although it varies from person to person, and attack to attack.
The unpredictability of HAE can make life difficult—both for people with HAE and those who care about them. Days of work lost to debilitating attacks, plans canceled with short or no notice, can all take a toll on self-esteem and personal relationships.
One way Jake and his mother adapted to life with the disease is by working closely with their local emergency room staff (and we have our own ideas for emergency room situations).
Here are 3 more tips and tricks people with HAE have used to make life a little easier:
- Join the Hereditary Angioedema Association and get connected to others living with the same issues and concerns
- Carry a Physician Letter and Patient ID Card with you in case you end up in a medical facility that’s unfamiliar with HAE
- Create a treatment plan that addresses both preventative (prophylactic) care and a way to treat acute attacks
