Kentuckian with rare, debilitating condition supported for over a decade by UK HealthCare

LEXINGTON, Ky. (June 26, 2023) — Eastern Kentucky native Misty Manning was born on the crisp fall day of Oct. 22 in 1982 at the original University of Kentucky Albert B. Chandler Medical Center. When she was young, her family moved to Daytona Beach, Florida, where she spent much of her childhood before one day moving back to the state that holds her heart: Kentucky.

Manning loves to put her innate creativity to use through glass-etching, woodworking and resin casting. Nothing can get in the way of doing what she loves — but for much of her life, she has lived with a rare, debilitating condition that has resulted in more than 40 surgeries on various parts of her body.

Her condition causes her to easily dislocate her joints with little-to-no strain, even at the slightest of movements. Manning said she remembers her first major dislocation happening just before her 7th birthday.

“On Oct. 4, 1989, I had been outside playing tackle football with my friends,” Manning said. “I went inside to get a drink of water and sit down for a minute, but as I went to sit down, my left hip dislocated so severely that my femur essentially ended up underneath my armpit.”

She was rushed to the emergency room by her mother, where she went under her first major surgery. Manning and her family were told she would never walk again.

“I was transferred to a children’s hospital in Tampa and spent time there as an inpatient for a while,” Manning said. “They diagnosed me with vascular Elhers-Danlos syndrome, which, up until about five years ago, we believed was the problem. My doctors at UK now believe this was a misdiagnosis of sorts, and they’ve been running tests to see if they can identify what’s really going on.”

Manning was born with a condition where her body produces an abnormal amount of collagen. This condition, when identified by doctors, is often paraphrased as “Ehlers-Danlos Syndrome,” although it can present at many different severity levels and in many ways.

This type of condition, like Manning’s, will cause multiple joint instabilities and arthritis, in addition to problems with the heart, lungs and more. Srinath Kamineni, M.D., a shoulder-elbow specialist and associate professor of orthopaedic surgery at the University of Kentucky College of Medicine has been seeing Manning since she moved back to Kentucky in 2010.

“In reality, there is a large spectrum of collagen conditions,” Kamineni said. “From normal to grossly abnormal, and any level in between. One of my major research interests is collagen and its biological function in arthritis and instability, therefore Misty’s condition has been a great interest of mine, and I’ve been very lucky to work with her for so many years.”

After Manning’s first major injury, she was determined to walk again. In physical therapy, the young girl worked very hard to get there.

“Even as a 7-year-old, I was determined to prove the doctors wrong,” Manning said. “It took two-and-a-half years, but I was able to begin walking again, and I’ve been walking ever since.”

Now 34 years later, Manning said she knows that she is probably facing returning to a wheelchair within the next couple of years.

“Just because of my condition, I know I’ll probably have to be in a wheelchair again sometime soon,” Manning said. “But since I’ve moved back to Kentucky — the doctors at UK have done everything in their power to keep me as mobile as possible, for as long as possible. They’ve been great.”

Kamineni has performed three surgeries with her, two on the right shoulder and one on the left shoulder for fusion and stabilization of the joints.

“A lot of doctors, because of how severe, rare and complicated my condition is, would flat-out refuse to treat me,” Manning said. “Which is completely devastating, you know. And it has been like this my whole life. But doctors at UK — they have never once refused me. They’ve been upfront and honest with me, no matter who I saw.”

Due to the severity of the instability in her shoulder joints, lack of structural tissues, and loss of bone, Manning and Kamineni concluded that the best solution to sustain most of the use of her arm would be to conduct a shoulder fusion on her right arm. While this would limit the range of motion she has from her shoulder, it would maintain the range of motion in her elbow and hand.

Manning said Kamineni’s treatments have been completely life-changing.

“He has given me the use of my arms for a lot longer than I would have had, if it weren’t for him and the other doctors who have treated me,” Manning said. “My right shoulder is fused, so I have limited movement in my right arm. But even the fact that I can use my arms at all is a blessing in itself.”

Out of Manning's more than 40 surgeries in her lifetime, many of them have been with UK HealthCare Orthopaedic Surgery and Sports Medicine, as well as the College of Dentistry — who have operated on many parts of her body, including the reconstruction of both her upper and lower jaws.

“I was on an all-liquid diet at the time,” Manning said. “Without the dental reconstruction, I think I would have starved to death. So, these surgeries I’ve had with UK HealthCare have been completely life-changing in many different ways.”

Remaining as mobile as possible throughout her life has been crucial to not only Manning’s physical health, but her mental health, too.

“I love being creative,” Manning said. “Anything you can do with your hands, I love. If I weren’t able to channel my creative energy, it would have been really hard to get through life, with all of the medical issues that have been thrown my way.”

Today, Manning continues to tend to her newborn chickens, spend time with her family and creates dream catchers in her free time at her home in Ezel, Kentucky. All-in-all, Manning wants everyone to know one thing.

“I’m not the only person out there with a strange, unknown medical condition that has severely impacted my life,” Manning said. “More attention needs to be brought to those of us who do. We’re all just hopeful that we find good doctors who can take care of us and learn from us to help others — like they do at UK. They have touched my life so deeply and deserve so much credit for what they’ve done.”