On Saturday, May 9, 2015, the Community of Colusa took to the sidewalks to raise awareness for a rare hereditary disease.
HAE or Hereditary Angioedema is a disease that can cause substantial swelling in various parts of the body, including the abdomen and face. HAE is caused by the poor functioning or lack of a protein called C1 esterase inhibitor.
“It causes severe abdominal pains or the swelling of my throat,” said Crystal Heidrick who suffers from the disease, “my two sons have swelling of the face, hands and feet.”
Triggered by the slightest trauma or the common cold, the disease can be life threatening to some.
Heidrick discovered she had the disease when her son was experiencing facial swelling with no explanation, and he was tested.
“When they said that he had this disease, they said I should get tested too as it could explain some of the symptoms I have had in the past,” said Heidrick, “I got tested and discovered I carried it too.”
Heidrick was relieved when only two of her five children had the hereditary disease but remains worried about their future.
“I worry about them when they are out playing,” said Heidrick, “the slightest trauma can cause swelling – but I have to let them be kids and grow up.”
Heidrick and her two sons are on preventative and onset therapy to help reduce symptoms.
Heidrick’s father passed away at the age of 34 from throat swelling, and could have been a carrier of the disease.
“This disease is so rare that often many doctors don’t know about it and will introduce other therapy’s that only cause more suffering,” said Heidrick, “the Walk is held to raise awareness and to help those in need with this hereditary disease.”
The Colusa ‘Walk the Square’ event is the first HAE Fundraiser and Awareness event in the western region.
“I was shocked to discover that we hosted the first event on the west coast,” said Heidrick, “we had a successful year last year and this year has grown tremendously.”
Over 150 community members from the region walked the streets of Colusa.
“I am so grateful for the support of the community who came out and supported our cause, some couldn’t walk today, so they made a donation,” said Heidrick, “I am truly touched that the Colusa Fire Department came out and supported the cause by walking in their gear.”
Lois Perry, the director of patient services and clinical programs at the United States Hereditary Angioedema Association, was the guest speaker.
Colusa Walks for HAE
“Because this disease is so rare, we are finding more people with the disease through various outreach education and awareness events,” said Perry, “Lots of times when we find one person with the disease we quickly find others in the family.”
This was true for one Colusa County resident who appeared on Heidrick’s doorstep after last years event.
“This lady came to my door and said that she might have this disease and wanted more information,” said Heidrick, “I was able to send her in the right direction to get the help she needs. We stay in contact, and she updates me on her treatment and status.”
“It’s great that we can help people like this,” said Heidrick.
Heidrick commented that she would like to thank the members of the business community who’ve donated raffle and other goods and services for the event.
For more information about HAE, visit the US Hereditary Angioedema Association Website at www.haea.org.