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October means more than celebrating Halloween to several families in Utah Valley. October is Primary Ciliary Dyskinesia Awareness Month. PCD is a rare genetic disorder that affects the microscopic hairs lining the lungs, ears and nose and prevents them from properly clearing mucus.
The Shops at Riverwoods partnered with those in the area affected by the disorder to raise awareness through a Pumpkin Parade Oct. 25.
“We are thrilled we can help provide an opportunity for the community to be educated further about this rare genetic disorder,” said McKell Law, marketing director for the Riverwoods Shops.
The event began three years ago to provide non-scary Halloween fun for families. This is the first year the event will help promote knowledge of this lesser-known disease.
As a newborn intensive care nurse Anne Bednar witnessed many families struggle to see their children diagnosed with unknown conditions. It wasn’t until her son Sam was diagnosed with PCD that she gained a deeper understanding of what the parents went through.
“I now understand the hope of a mother who wants a cure for an illness that could take the life of her child far too early,” Bednar said. “This is a major reason why I hope to raise awareness and funds for Sam’s rare disease.”
Many individuals who are associated with PCD distributed information and answered questions at a booth at the Pumpkin Parade.
Additionally, artwork, jewelry and other items were sold at the PCD booth. All of the proceeds from the sales will be put toward research. The artwork sold was donated to the cause by local artisans.
“By donating pieces to help with research I hope that in the future there will be more choices for PCD patients,” said Sarah Jane, illustrator and owner of Sarah Jane studios.
Eleven-year-old Ellery Davidson, who has PCD, performed original songs on guitar. She shared her experiences and feelings about living with PCD through her music.
Researchers believe there may be as many as 25,000 people in the U.S. who suffer from the condition; however, only about 400 people have a confirmed diagnosis, according to the official PCD website.
The condition can lead to lung damage, hearing loss and chronic infections. With increased awareness that PCD exists, Bednar and others hope those living with the disease will be able to receive treatment earlier and live a healthier and happier life.
Currently PCD treatments use Cystic Fibrosis research, and no medications specifically for PCD have been tested. With better research, hopefully the medications will be able to target the problem rather than just treat the symptoms.
