Monday, May 16th was HAE Awareness Day.
In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to “create an environment in which there is better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy life.”
One person who didn’t wait until HAE Day to get the word out was Linnea Starr. The high school senior took it upon herself to educate her school’s HOSA club (Health Occupation Students of America) about her condition.
Within her family, Linnea is a third-generation HAE sufferer–her grandmother and mother also have HAE.
“There are many other people out there who support each other,” Linnea says, “but what’s really encouraging is how strong my mom is for me.”
When talking to her peers, Linnea touched on how rare HAE is (affecting 1 person out of 10,000-50,000) and why it happens (it’s an inherited disorder characterized by missing or ineffective C1 inhibitor, a protein in the blood). She was also careful to point out that when a person swells from an HAE attack, “it’s not an allergic reaction. When people see swelling they automatically think ‘I’m gonna give you antihistamines or Benadryl or Claritine,’ but that doesn’t work. [Treatment] has to be with C1 inhibitor.”
Throughout her life, Linnea has learned to recognize her triggers for an attack. Whether it’s stress, hormones, illness, or injury, a variety of things can lead to a swelling episode. And those swells can happen internally (abdomen, throat) or externally (face, feet, hands).
“It’s very dangerous and painful. My mom says the pain from a stomach swell is worse than childbirth without pain meds.”
Thankfully Linnea is on treatment. Now, by sharing her experiences, she hopes others who don’t live with HAE will learn to recognize just how serious the condition is and be more understanding when HAE disrupts her life.
Whether it’s for HAE Day or “just because,” what are some of the ways you’ve helped educate others about HAE and other rare diseases? Leave your comments below!