Hereditary Angioedema - ABC 33/40 - Birmingham News, Weather, Sports

Hereditary Angioedema

Posted: Updated:

A local woman is on a crusade to bring awareness to a dangerous disease that chances are, you have never heard of.  Hereditary Angioedema.

 This is a rare and life threatening genetic condition that could be mistaken by some folks as an allergic reaction.  But ,instead the danger is more than skin deep.

Let me first introduce you to Hillary Schafer of Cullman.

She's telling her family's story of hereditary angiodema or HAE for short.

Hillary and her mother live with disabling and painful condition.

She says her teenage sister lost her battle to it-- eight years ago.

When I searched on the internet to see what HAE looks like, I found these pictures.

  Dr. James Boner  of Alabama Allergy and Asthma says, it's episodic swelling caused by an enzyme deficiency.

  Boner says, "In this condition it's not swelling with hives. It is almost never associated with hives...most allergic reactions you might have swelling in face, hives on the body in HAE it's just swelling. It can be anywhere on the body it can be the face, it can be the hands, the feet particularly worse, it can be the throat."

 Hillary Schafer says, "When you go to the ER no body knows what you have. You're left in a room with not treatment you feel like you're not important, the disease is not important... That's what we need. We need awareness and we need support because it's rare and not a lot of people know it's still just as important. 11:16> <as any other disease out there."

Schafer was diagnose with HAE five years ago while she was pregnant with her first child.

Because of new medicines and Hillary's less-severe case, she hasn't had an attack in a while. When she does it's the painful abdominal attacks of HAE.

Dr. Bonner says there are at least 100 people in our area with HAE.

Her oldest daughter, does not. Her youngest will be tested when she becomes three years old.

Dr. Boner says, when HAE runs in the family over generations, half of the family members can have it.

Hillary wants to be a voice to bring awareness.  She and her mother have organized a walk on the first HAE awareness day, it's in memory of her late sister, Lyndon Brooke Stidham.

Lyndon Brooke Stidham Memorial Walk for Hereditary Angioedema Awareness Day is

May 16 at 8 AM at Heritage Park in Cullman.   For more information go to www.lbsmwalkforhae.eventbrite.com.