Winchester youth determined to bring awareness to little-known disorder

Published 12:00 pm Friday, April 5, 2024

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April has properly been recognized as Autism Awareness Month, Stress Awareness Month by the National Institutes of Health, and even Alcohol Awareness Month – among others – by the U.S. Department of Health and Human Services. 

One young lady from Winchester is helping lead the effort to bring awareness to yet another cause. 

April is National TAR Syndrome Awareness Month, focusing on improving the support of those with the rare congenital blood disorder. 

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Twenty-five-year-old Chevi Price, who was born and lives in Winchester and has TAR Syndrome, spoke. 

“[We want] to inspire other people that have TAR Syndrome to keep going and know that they’re not alone in the world,” she said. 

As stated on, “Thrombocytopenia-absent radius (TAR) syndrome is a rare disorder that is present at birth (congenital). It is characterized by low levels of platelets in the blood (thrombocytopenia) and absence (aplasia) of the long, thin bones of the forearms (radii) but with presence of thumbs.” 

As such, individuals – including Price – typically have underdeveloped and thus shorter arms, or may be shorter in stature than their peers. 

Other symptoms, such as structural malformations of the heart or kidney defects, may sometimes occur. 

For Price, one such symptom is a lack of kneecaps. 

Yet, as much as can be learned, there is still comparatively less recognition of TAR Syndrome in many places. 

“Not a lot of people know about it,” Price said, pointing out that TAR Syndrome affects one out of every approximately 100,000 individuals. “It’s very rare to where it’s not [recognized] as a disability in the government’s eyes yet.” 

She elaborated that such recognition could reap positive results. 

“We don’t get a lot of benefits because we don’t have a [recognized] disability,” she said. “For me, I could sit with a new doctor and I have to explain it to them right now…because they don’t know what it is.” 

However, while some supportive tools may at times be required, the disability hasn’t kept Price from taking action. 

A motivational speaker who has used social media as a tool for bringing awareness, she was both a cheerleader and volleyball player in her youth. 

“I’ve grown up where not a lot of people treated me differently.” she said. 

Price also notes that she is not the only person in Clark County with TAR Syndrome.

“As I tell everybody, ‘Look up more because you might find somebody with TAR Syndrome when you least expect it’” she said. 

Fortunately, some efforts are already in place to help spread awareness. 

On Saturday, April 6, from 8:00 a.m. to 12:30 p.m., the 2nd Annual TAR Syndrome Awareness Walk will take place at Wild Heath Field in Lexington at 207 Legends Lane. 

Asked what others can continue to do to spread awareness of TAR Syndrome, Price mentioned wearing the color blue. 

She also stated what she wants others to know. 

“We might look [different], but we live life normal,” Price said. “A lot of people…put us in a box where they see us needing a lot of help, when in reality we don’t. We just need the right research.”