Hereditary Angioedema FAQ

In Dance Spirit’s September issue, 15-year-old dancer Kelsie Neahring shares her struggle with hereditary angioedema (HAE), a rare disorder that causes her body to unexpectedly swell up. We talked to G. Wendell Richmond M.D., clinical assistant professor at University of Illinois College of Medicine at Rockford and one of Kelsie’s doctors, to learn more about HAE.

What is HAE?

HAE is an extremely uncommon disease caused by a deficiency of C1 inhibitor, a protein that controls a compound called bradykinin that helps maintain fluid balance within tissues. This causes angioedema, which is simply the swelling of the face, hands, abdomen, etc. The frequency of attacks varies. Some patients will have one or two attacks per year, while someone like Kelsie can have 3 or 4 attacks in a week. When the swelling involves the larynx and throat, HAE is potentially life threatening.

What are the types of HAE?

There are three forms of HAE: type 1, type 2 and HAE with normal C1 inhibitor, which was referred to as type 3 until recently. Type 1 is when the body doesn’t make any C1 inhibitor at all. Type 2 is when the body makes C1 inhibitor, but it doesn’t work in the way it should. And HAE with normal C1 inhibitor, the type that Kelsie has, is when the body makes working C1 inhibitor, but patients still experience angioedema.

How do I know if I’m at risk for hereditary angioedema?

Individuals with Types 1 and 2 HAE usually have a family member with the disease. There are also some clues to look out for. Maybe you’ll go to the dentist for a procedure and come out of it with a lot of facial swelling or you’ll grab a tool tightly and have swelling of the hands. Frequently, symptoms are relatively subtle, so it often goes undiagnosed or is mistaken for something else like an allergy. In females, angioedema symptoms often begin in relation to an increase in estrogen, whether it’s starting your period, taking birth control pills or getting pregnant.

What can HAE patients do to treat their symptoms?

Patients with HAE type 1 and 2 can keep things relatively in control by taking attenuated antigens, a variation on testosterone that increases the production of C1 inhibitor. Unfortunately, for patients with HAE with normal C1 inhibitor like Kelsie, there is no way to prevent attacks. Instead, they can take an inhibitor of bradykinin at the start of an attack. Though these medications are effective, they only last for about an hour to an hour and a half.

Win It
Photos by Erin Baiano

It's time to get your pirouette on! From September 5th to September 30th, we're hosting a contest to find out who's the best turner of them all.

Put together your most impressive turning combo. Post a video online. Share your turns with us and thousands of other dancers around the world. And if our editors think you're the top turner, you'll win a fabulous prize.

Keep reading... Show less
Dancer to Dancer

All of 18-year-old Kaylin Maggard's dreams—from scoring the title of National Senior Outstanding Dancer at New York City Dance Alliance Nationals to winning the 2017 Dance Spirit Cover Model Search—are coming true. And to anyone who knows the gorgeous contemporary dancer, that's no surprise.

From the moment the Dance Spirit staff met Kaylin, it was obvious her humility and talent would take her far. Not only did she go full-out during the photo shoot and class at Broadway Dance Center, but she was always cheering on, laughing with, and supporting her fellow CMS contestants Haley Hartsfield and Michelle Quiner. During the voting period, the social media world was abuzz with praise for her work ethic, positive attitude, and generosity.

Since her CMS trip to NYC, Kaylin's moved from her hometown of Columbia, MO, to the Big Apple for her freshman year at Juilliard, and is busy getting acquainted with the city. As for the future? She's taking it one opportunity at a time, but something tells us we'll be seeing this contemporary queen reach new heights every year.

Keep reading... Show less

Instagram star Kylie Shea has built a following of nearly 170,000 with her playful workout videos, which combine traditional fitness activities, like jumping rope or running on the treadmill, with pointe shoes and sassy choreography. Shea's effortless cool-girl-next-door vibe and solid ballet technique make her vids totally irresistible.

Now Shea's using her platform to address the body image issues that tend to plague dancers. In a poignant video, she sheds her clothes and tugs at her skin. The caption explains her relationship with her body and the pressure she feels to maintain a certain aesthetic as a dancer.

Keep reading... Show less

Physical discomfort is inevitable when you're spending tons of hours in the studio every day, but some pain shouldn't be suffered through. "Dancing through pain can make an injury worse and lead to more time away from dance," says Dr. Joel Brenner, medical director of dance medicine at Children's Hospital of The King's Daughters in Norfolk, VA. "Failing to rest and recover when you're in serious pain could even lead to the point where you're unable to dance in the future."

That may sound scary, but there's good news: If you take precautions and listen to your body, many injuries can be stopped in their tracks. The first step? Knowing what's normal—and what's not.

Keep reading... Show less
(From left) Beatriz Stix-Brunell and Yasmin Nagdhi in a still from "Duet"

Think about it: How often do you see a ballet pas de deux for two women? Almost never, right? Sometimes, choreographers will forgo the traditional danseur-ballerina pas to make a duet for two guys, since they can lift and partner each other easily. But a dance for two ballerinas is a rare thing.

That's part of what makes "Duet," a new video by director Andrew Margetson featuring Royal Ballet beauties Yasmin Naghdi and Beatriz Stix-Brunell, so compelling.

Keep reading... Show less
Watch This
(From left) Reese Hatala and Phoenix Lil' Mini in "LULAS" (via YouTube)

What happens when Willdabeast Adams gets two of his most amazing lilBEASTS—the pint-sized Reese Hatala and Phoenix Lil' Mini, aka LULAS ("Love U Like A Sister")—to make a video set to a throwback mashup of songs? So, so much cuteness. And so, so much 🔥🔥🔥 .

Keep reading... Show less
Dancer to Dancer

"Dancing with the Stars" pro Lindsay Arnold has become a mainstay on the hit show—this fall marks her ninth season! America has fallen in love with her larger-than-life stage presence and vivacious personality. Specializing in Latin ballroom, Arnold trained in Utah with teachers including fellow "DWTS" veterans Shirley and Mark Ballas. After high school, Arnold planned to study physical therapy on a full academic scholarship at Utah Valley University—until landing a spot on "So You Think You Can Dance" Season 9. Catch her on Season 25 of "DWTS" this fall!

Keep reading... Show less
Dance News

J.Crew's putting a whole new spin on its brand —literally. The popular clothing line's inspired ad campaign has a group of cute male models showing off their best moves in a series of playful dance battles. When we saw one of those models throw down the gauntlet with a rather impressive series of chaîné turns, we knew he had to be a trained dancer, and we were right: He's former New York City Ballet corps member Joshua Thew. Dancer and model Smith Reesie also shows off in a seriously impressive freestyle.

Keep reading... Show less


Want to Be on Our Cover?





Get Dance Spirit in your inbox