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‘PEEPbra’ sculpture aims to raise awareness about rare diseases during annual PEEPshow in Westminster

Displayed among more than 100 pieces of confectionary creativity at the Carroll County Arts Council’s PEEPshow in Westminster this week is a zebra sculpture, created with a mission to raise awareness about rare diseases. The artwork was made by several Manchester residents. At the Carroll County Arts Council’s PEEPshow in Westminster, one sculpture created by Kimberly Miller, Annette Maughan and the family to represent rare diseases has been displayed among more than 100 pieces of confectionary creativity. The sculpture, titled ‘PEEPbra,” a zebra created by Miller, is meant to raise awareness about rare diseases and is viewed at the TownMall of Westminster, 400 N. Center St., from 10 a.m. to 6:30 p.m., Monday through Saturday and from noon to 5:30pm on Sundays (including Easter) until April 10. Miller has created art for the last three years, but her medical conditions have made it more difficult to create this year. Her son, Glenn, 20, was diagnosed with KBG Disease, a rare genetic disorder, and she has the cognitive capacity of a toddler and suffers from seizures, among other symptoms. The zebra is a powerful symbol for the rare disease community, and the foundation is dedicated to helping people find the places they are accepted.

‘PEEPbra’ sculpture aims to raise awareness about rare diseases during annual PEEPshow in Westminster

게시됨 : 12개월 전 ~에 의해 Thomas Goodwin Smith ~에

Displayed among more than 100 pieces of confectionary creativity at the Carroll County Arts Council’s PEEPshow event, one sculpture has a mission to raise awareness about rare diseases.

All three-dimensional PEEPshow entries, including the “PEEPbra,” a zebra created by Kimberly Miller, Annette Maughan and the Maughan family to represent rare diseases, can be viewed at the TownMall of Westminster, 400 N. Center St., from 10 a.m. to 6:30 p.m., Monday through Saturday and from noon to 5:30 p.m. on Sundays (including Easter) until April 10.

“We wanted to do something meaningful,” said Miller, 53, of Manchester. “I have three rare diseases and we just wanted to get the word out about being rare.”

Miller has created art for PEEPshow for the last three years, but her medical conditions have made it more difficult to create this year.

A mutual friend put Miller in touch with Annette Maughan, 52, of Manchester, whose son has a rare disease. The Maughan family immediately loved the idea of creating art to raise awareness about rare diseases.

Maughan said there is a sense of community among those diagnosed with rare diseases, even if it is not the same disease, because patients are likely to face similar challenges in diagnosis and treatment.

Glenn Maughan, 20, Annette’s son, was diagnosed with KBG Disease, a rare genetic disorder. As a result, he has the cognitive capacity of a toddler and suffers from seizures, among other symptoms.

Miller has been diagnosed with Familiar Partial Lipodystrophy, Hereditary Angioedema and Ehlers Danlos Syndrome. She said her lipodystrophy is a rare genetic disorder that prevents her body from storing fat correctly and is likely to lead to multiple organ failures. Angioedema is a rare inherited disorder characterized by the accumulation of fluids outside of blood vessels, and both of these diagnoses are complicated by EDS, a collagen disorder. Miller said that she visited 29 doctors before being correctly diagnosed with her first rare disease.

“Every time I go to a doctor I’ve got something else wrong,” Miller said. “It’s emotionally draining, but I just keep putting on a happy face and trying to get through it all … people do not understand what we go through.”

About 7,000 medical conditions are classified as rare diseases, and the zebra is a powerful symbol for the rare disease community. In medicine, doctors are trained to, “think ‘horses’ when you hear hoofbeats,” Maughan said. In this analogy, horses represent common diagnoses, and zebras represent rare diseases, which, though rare, could also be the cause of a patient’s symptoms.

Connecting to other people with similar experiences has been a saving grace since receiving her son’s diagnosis, Maughan said. To help other families dealing with KBG Syndrome, Maughan and her husband started the KBG Syndrome Foundation.

Glenn Maughan was among about 60 individuals with KBG Syndrome worldwide when he was diagnosed about a decade ago, but hundreds more have been diagnosed with the rare disease since the foundation’s inception.

“We really need to be held accountable as a society for helping people find the places where they’re accepted,” Maughan said, “and that’s why we do what we do.”

Glenn has three younger siblings that assist in caring for their brother, and Annette said assembling the zebra was an all-hands-on-deck activity for the Maughan family. This project was the family’s first foray into PEEPshow art.

“Her whole family was so excited about it,” Miller said, “so they decided that we all work together to get it done … we were excited about sharing and letting people know that it’s OK to be rare.”

A base and PEEP-shaped materials for the PEEPbra were 3D printed by the team’s PEEPshow veteran, Miller. Maughan said Miller brought the materials to her house but was unable to contribute as much as she would have liked to assembling the sculpture because she was having an off day medically.

Carroll County Arts Council marketing coordinator Rosalyn Thackston said PEEPshow visitors who have seen the sculpture were initially intrigued by the uniqueness of a piece that is entirely 3D printed. Interest in the project only grows when they stop to read informational literature about rare diseases displayed beside the PEEPbra.

“People like to use their entries to call attention to a bigger issue very frequently because they know how many visitors we get and how many eyes will be seeing it,” Thackston said.

PEEPshow is likely to be visited by more than 20,000 people. Thackston said other cause-focused projects have endeavored to raise awareness about Alzheimer’s disease and proper administration of the drug Narcan (which can be used to treat opioid overdoses).

“The more we raise awareness about different rare diseases, the earlier the diagnosis comes and the earlier the treatments and therapies can come,” Maughan said, “which means an increased positive prognosis in most cases.”

Miller said it is uncertain how long she will live, but she plans to spend as much time and energy as possible participating in medical trials and sharing her story for the benefit of others. She said she won’t ever stop fighting.

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