By Tabitha Johnston, originally published May 25, 2018 in The Shepherdstown Chronicle
In April, Ashton Nesmith-Kochera, a board-certified patient advocate and Tri-State Ehlers-Danlos Syndrome Support Group leader, lobbied for Governor Jim Justice to proclaim May as EDS Awareness Month.
Nesmith-Kochera, who lives in Martinsburg, was excited to receive a certificate with that proclamation signed by the governor three weeks later, because she wants people to understand what it means to have EDS.
Found in one in 2,500 to 5,500 people around the world, EDS is a genetic condition resulting from a lack of collagen in the joints and skin. As of this year, there are 14 identifiable types of EDS. EDS has no cure, so doctors treat its symptoms on a case-by-case basis with drugs, physical therapy or surgery.
“It’s really hard to get people to grasp our situation,” said Nesmith-Kochera, who has the condition. “If we itch, we will break our veins. Nobody sees us at our worst, because we don’t want to show that when we’re at our worst.”
Nesmith-Kochera said she’s more open than most people with EDS, because she wants to raise awareness.
According to the Ehlers-Danlos Society, there are two main EDS symptoms: joint hypermobility and variable skin hyper-extensibility. These symptoms are often accompanied by many other problems, including chronic musculoskeletal pain, scoliosis at birth, postural orthostatic tachycardia syndrome, poor nutrient absorption and high-risk pregnancy.
To the average person, individuals with EDS don’t stand out in a crowd. However, every day they deal with their symptoms, like skin bruising and tearing easily, bones popping out of joints or bending too far, body tremors and not being able to sit or stand for long periods of time.
Nesmith-Kochera’s family health records indicate her maternal great-grandmother may have had EDS, and that gene was passed down to many of her descendants.
The problems this has caused Nesmith-Kochera’s family-including her 7-year-old daughter having to quit dance and her sister being labeled a drug user at her old waitressing job because of the scars and bruises on her skin and her body tremors-are the reasons why Nesmith-Kochera cares so much about being an advocate for EDS and individuals with the condition.