Many Faces, One Family: HAE Day 2014

September 30, 2014

Rare Disease DayHereditary angioedema (HAE) is a rare, potentially life-threatening condition, which is often extremely difficult to diagnose.

Those who have it face the possibility of sudden swelling of the face, extremities, gastrointestinal tract or larynx. Patient experiences are highly variable, but many commonly encounter pain, nausea and sometimes even shame. The symptoms come. The symptoms go. It can take years to find out what is wrong, and in the meantime, misdiagnoses sometimes lead to unnecessary surgeries, inappropriate treatment, or frequent visits to the emergency room.

For the estimated one in 10,000 to one in 50,000 individuals worldwide anticipated to have the condition, there are medications that can help. But there are other things that patients also need—a sense of community, hope that the future holds promise, a reminder that life can be good.

“Raising HAE awareness enables patients to tell their stories and connect. A way to remind patients that they’re not alone.”

Kim Gariepy Product Marketing Lead, HAE

This year, as part of a global campaign to raise awareness about HAE, Shire launched a campaign called Me, Not HAE. “It is a way,” says Kim Gariepy, Associate Marketing Director for the Shire HAE franchise, “to enable patients to tell their stories and connect over the journeys they’ve taken. A way to remind patients that they’re not alone.”

Conducted in collaboration with the International Patient Organization for C1 Inhibitor Deficiencies (HAEi) and the U.S. Hereditary Angioedema Association (HAEA), the May 16th event was timed in conjunction with the 2014 Global HAE Global Conference that took place in Washington, DC. 

In advance of the May date, Shire commissioned an artist to create an invigorating HAE Day image titled Many Faces, One Family—“an image,” says Gariepy, “that was inspired by patient case studies and replicated the journey HAE patients take through life.” 

That artist image—bright purple and pink—was then recreated on HAE Day by chalk artists in three high-traffic areas at the Navy Pier in Chicago, IL, at The Embarcadero in San Diego, CA, and at Union Station in Washington, DC. At each chalk-art installation HAEA volunteers were onsite to share their stories, distribute fact sheets about their organization, and answer questions about this little-understood condition. Many visitors stopped by and recorded the event on their cameras and smart phones. HAE Day pins were given out to those with interest. 

Understanding grew. 

Meanwhile, at the DC conference, patients from all around the world were getting a chance to know each other and to learn more about advancements in HAE. Nearly every one of those patients stopped by the Shire booth, which was entirely devoted to patient and disease awareness. 

“We wanted to continue the awareness campaign at the conference itself,” says Lauren O’Brien, Communications Director for Shire’s Rare Diseases. “We invited the patients to get a photo taken in a photo booth, to post that photo on the public chalk art mural, and to write a message of support to the entire HAE community. At the same time we shared videos of patient stories in the exhibit space itself.”

Patients at the conference also participated in an onsite video recording of their own experiences. With patients hailing from all continents of the world, the patient conversation unfolded in many languages and with great energy.

“HAE is a condition that can affect anyone, but it doesn’t have to affect the ability to have a deeply fulfilled life,” says Emmanuel Dulac, Head of Shire’s Rare Diseases Business Unit. 

“At Shire,the entire patient experience matters to us. We are committed to helping patients engage with one another and offering services which allow patients to do more to help themselves.” 

Find out more at www.haeday.org