Painting a positive picture: Artist manages symptoms, continues to paint
Apr. 29—IRONTON — It was a long road for Sydney Kendrick to learn she had Classic Ehler's Danlos Syndrome.
The connective tissue disorder is characterized by an unusually large range of joint movement (hypermobility), skin that is soft, stretchy and fragile and easy bruising.
In Kendrick's case, she experienced dislocation and partial dislocation of joints, hypermobility, migraines, GI complications, spine complications and the beginnings of unexplained allergy problems, among other symptoms.
"My body was becoming more and more of a trainwreck," the 26-year-old artist recalled.
Puzzling problems
But a diagnosis would elude her for a while.
There are other types of the illness, but Classical EDS strikes one in 20,000 to 40,000. Many physicians don't have it on their radar when diagnosing patients.
"We started off with going to a rheumatologist to look into any sort of autoimmune disorder or have a clue to this mystery disease," she said, noting little came of that visit.
"At that point, I was on a feeding tube due to the progression of my GI problems," Kendrick said. "She looked at me and told me that I looked and seemed healthy and then misdiagnosed me with fibromyalgia and told me to do yoga."
Education needed
But Kendrick said she's not angry about her misdiagnosis and blames it on a lack of awareness about EDS.
"This did delay for me to have a proper diagnosis. I got a second opinion. Honestly I got extremely lucky the second time," she continued. "This provider had written and published papers on Ehlers-Danlos Syndrome. They diagnosed me within 30 minutes."
She was diagnosed in November 2017.
"I felt a relief. A huge relief," she said. "It's like this saying that you can't fight a monster without knowing what it is. I finally, finally, knew what that monster was."
The tip-off was intestinal dysmotility, which can mean abdominal pain, nausea, vomiting, bloating, constipation and malnutrition from lack of nutrient absorption.
"There's this saying within the medical field that if the issues don't connect, think connective tissue. And I firmly believe that's what that particular provider was thinking," she said. "That's what kick started my journey to really look into things and start the search for a proper diagnosis to explain all of the weird things that were happening to me that seemingly did not make any sort of sense."
Managing symptoms
EDS continues to affect her life, as there is no cure, only management.
"My GI system within four years went from myself being able to eat whatever I want to being dependent on TPN and needing a transplant to live," she said. TPN stands for total parenteral nutrition, a method of feeding that bypasses the gastrointestinal tract to transmit a special formula through a vein to provide most of the nutrients the body needs. "I have to be careful of how I move my body. One wrong move, I dislocate a joint. Part of my spine is fused due to direct complications. I have a lot of chronic pain, just to name a few," she said.
As a painter, hours of work are limited because sitting for hours at a time aggravate her chronic pain. She also tends to drop items she holds in her hand. But she said she's still thankful to be able to pursue art in any amount.
"A good bit of my work ends up starting with some of my ink pieces I have done in the hospital," she said, adding her physical problems influence her work.
"I have a very large oil painting that I am working on that tells my story within the piece using symbolism," she said. "And of course my, 'What Not to Eat' series is about me not being able to eat."
Her work has been shown at the Grayson Gallery and Art Center and the Highlands Museum and Discovery Center.
She's planning a solo show for next year at the gallery and is considering selling her work online.
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