WHITESBURG, Ky. – Jessica Martensson was 9 years old when she noticed a crunching sound in her knees.

“Crepitus,” she explained of the condition usually caused by injury or age.

Three years later, she was diagnosed with arthritis in her hand.

“There were a lot of things like that,” she recalled. “Little oddities like my joints dislocating or my skin bruising and scarring very easily.”

She didn’t know it at 12, but those “little oddities” marked the beginning of what would become a lifelong struggle with her health and, more frustratingly, she said, finding a diagnosis.

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Martensson, who works as a health records analyst at Whitesburg ARH, led an active childhood in her native Tennessee.

“I played the violin and softball and swam competitively,” she said. “I really loved it.”

She was forced to give each up one-by-one, however, when she tore her calf, injured her hip and dislocated both shoulders.

While her classmates lived life with teenage abandon, Martensson slowed down – her social calendar full of doctors’ appointments instead of parties.

No matter how many specialists she saw, though, resolution never came.

“The doctors never really questioned it or seemed too concerned about any of it,” she said. “They would just say, ‘Oh, it’s nothing. Your joints are just really loose’ or ‘you’re fine, that’s just how the body works.’”

In time, Martensson began to believe them.

“Throughout the course of my life, I told myself, ‘Maybe it’s not as bad as I think it is,’” she said.

But convincing her mind there was no problem proved a bit easier than convincing her body. 

As she moved from her teens to her 20s and then her 30s, Martensson’s health issues worsened.

“Arthritis, chronic fatigue, chronic pain, frequent upper respiratory illnesses, digestive issues,” she said, listing just a small number of her ailments.

With no real guidance from the healthcare field, she decided to try exercising again in hopes it might make a difference. 

“I tried running, but was only able to do it three times,” she said. “The first time it hurt so much I couldn’t move. The second time, I ended up in the ER with chest pains.

“The third time, I hemorrhaged all the blood vessels in my legs.”

All of that, she said, and still no answers.

Martensson, now 36 and the mother of 3-year-old Natalie, had all but given up on ever having a diagnosis.

But when she relocated to her mother’s hometown of Whitesburg, she found something unexpected.

Hope.

“I started seeing April Fleming, a nurse practitioner at the Whitesburg Clinic,” she said. “She listened to me – to all the things that had basically been dismissed my whole life – and said, ‘You’re too young to experience all of this.

“’This isn’t normal.’”

But the abnormalities extended beyond just her, as Fleming noticed many of the same things with Natalie and with Martensson’s mother Rene Palumbo, who works as the HR manager at Whitesburg ARH.

“My mom has had the same type of struggles, but she gave up on trying to find answers a very long time ago,” Martensson said.

Neither mother nor daughter, however, had ever had the support of someone like Fleming, and Martensson’s journey for answers began anew with Fleming at the helm.

“We hit several brick walls,” Martensson said of attempts at finding answers through pulmonology, orthopedics and rheumatology. “But April said, ‘We have to keep pushing. We will find a way to do this.

“‘We will find something.’”

As she searched for answers, Martensson said Fleming floated a possibility.

“She said my skin looked very different than it should,” Martensson said. “She said she was pretty sure – 98 percent sure – it was autoimmune.”

Fleming, Martensson said, suspected she had Ehlers Danlos Syndrome, a genetic condition that weakens the body’s connective tissue, potentially affecting cartilage, bones, blood, fat, skin, joints, muscles and blood vessels.

Because there is no test for Ehlers Danlos, Fleming sent Martensson, Natalie and Palumbo to Lexington to speak with a geneticist.

“They reviewed our records and traced it back through my mom’s family to my great-grandmother who died of an aneurism, which is one of the risks,” she said. “They confirmed my mom, daughter and I all have Ehlers Danlos.”

Though an autoimmune disease is not a diagnosis to be celebrated, Martensson said finally having an answer was a relief.

“I don’t want to say I’m happy that something is wrong, because I’m not, but I am so happy to finally know what it is,” she said. “It’s so validating to be able to point to that and to know there are words for all of these problems.”

Martensson said the diagnosis gives her a roadmap, of sorts, to follow.

“I can say, ‘this is the thing that hurts’ or ‘this is what’s wrong,’ and I can make choices that help,” she said.

She said Fleming has helped her make nutritional changes and, because Ehlers Danlos can cause a Vitamin D deficiency, she now takes a supplement that has helped combat her fatigue.

And as much of a relief as it is for her to know how to better manage her health, Martensson said it is even more important that she knows how to help Natalie in the future.

“This changes the course of her whole life,” she said. “I can make decisions based on that and be informed for her as she grows. She’s 3, so I’ll let her run and be a child, but as she gets older, I can help guide her to choose activities that will protect her.

“It’s just such a relief.”

There is no cure for Ehlers Danlos, but for the first time in her life, Martensson said she has hope for her health.

“That’s because of April,” she said. “She not only advocated for me, but she also reminded me of how important it is to advocate for yourself. No one else has ever cared this much in my life. No one has ever stood up for me and fought for me like that.

“No one has ever cared like April cared.”

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Appalachian Regional Healthcare (ARH), is a not-for-profit health system operating 14 hospitals in Barbourville, Hazard, Harlan, Hyden, Martin, McDowell, Middlesboro, Paintsville, Prestonsburg, West Liberty, Whitesburg, and South Williamson in Kentucky and Beckley and Hinton in West Virginia, as well as multi-specialty physician practices, home health agencies, home medical equipment stores and retail pharmacies and medical spas. ARH employs approximately 6,400 people with an annual payroll and benefits of $474 million generated into our local economies. ARH also has a network of more than 1,300 providers on staff across its multi-state system. ARH is the largest provider of care and the single largest employer in southeastern Kentucky, and the third-largest private employer in southern West Virginia