By STEVEN JUPITER
BRANDON—Amanda Van Eps does not seem ill when you meet her. With a warm smile and a chic sense of style, she seems very put-together, especially in her workplace at Best Appliance in Rutland, where she works as a kitchen & bath designer.
But Van Eps is using her aesthetic skills to increase awareness of rare diseases, including her own. She was recently announced as a finalist in the Rare Artist Competition sponsored by the EveryLife Foundation for Rare Diseases. Her entry, entitled “Ball & Chain,” was chosen as one of 20 finalists out of 235 submitted works.
Van Eps lives with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders that affect connective tissues such as skin, joints, and blood vessels, often causing these structures to be weak and overly flexible.
“There’s really no such thing as ‘double-jointed,’” Van Eps said. “But that’s often how it’s described.”
The weakness and hyperflexibility of these tissues can cause many problems, ranging from easy bruising to the rupture of major blood vessels. Van Eps said up to 15% of the general population may be living with some form of EDS.
“I was 27 when I was diagnosed,” she said. “I was working at a bank and every time I stood up to use the printer, it was like curtains were completely coming down in front of my eyes. It’s an extreme form of when you get lightheaded when you suddenly stand up.”
It turned out her blood vessels just weren’t strong enough to keep sufficient blood flowing to her head. Low blood pressure and fatigue are among the earliest symptoms people with EDS notice, Van Eps said.
Because the symptoms of EDS are so varied, it can be hard to diagnose. Van Eps said she started exhibiting symptoms when she was 16. She is 34 now.
“It felt like my body was being compressed,” she said, since the tissues that normally keep bones in place were especially weak.
Before her successful diagnosis, she’d been erroneously told by one doctor that she had blood cancer. Fortunately, a visit to an oncologist revealed that cancer was not the cause of her symptoms, and she did not begin cancer treatments. She did have a benign, non-cancerous brain tumor removed several years ago.
The type of EDS that Van Eps lives with is not life-threatening but will always affect her normal functioning. She does not drive, for example, instead relying on her significant other to drive her from their home in Brandon to her job in Rutland and home again (he works in Rutland as well).
“I don’t drive because I can lose my vision unexpectedly,” she said.
She also said that she’s easily fatigued and has to pace herself throughout the day.
“I sleep a lot when I’m not working,” she said. “It’s something that my family commented on a lot when I was a kid. And when I’m under stress, my symptoms all get worse.”
Van Eps has found solace in art since she was a kid growing up in Rutland and uses it to help her process the frustrations of life with EDS. Since the disease is mostly invisible to others, she uses art to make it visible. Her finalist piece, “Ball & Chain,” for example, is designed to evoke her spine and ribs, which often give her trouble. The chains draping away from the central column are meant to move freely, as her own ribs sometimes do.
“My ribs are kind of wonky and sometimes slip out of place,” she said.
The pendant ball is meant to symbolize the weight of life with a rare disease.
The public is invited to vote on the finalists in the competition at rareartist.org. Voting is open from September 22 to September 30.
In addition to her artwork, Van Eps is an advocate for people living with disabilities and rare diseases. She is a board member of Disability Rights Vermont, for example.
“Living in a rural state adds unique challenges in accessing the care we need,” she said. “There aren’t many support groups in Vermont. It can be very alienating to go through diagnosis without other people who understand your experience.”
Van Eps is also working to ensure that new technologies and treatments, such as genome editing, remain affordable for those who need them.
Anyone who’d like to learn more about Van Eps, her art, and her advocacy can visit her website, hausofvaneps.com.
And don’t forget to vote for “Ball & Chain” at rareartist.org.
