Health professional provides insight on Ehlers-Danlos syndrome

A body chart shows various joints throughout the body, which can be affected by Ehlers-Danlos...
A body chart shows various joints throughout the body, which can be affected by Ehlers-Danlos syndrome.
Published: Aug. 25, 2021 at 8:32 AM AKDT
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ANCHORAGE, Alaska (KTUU) - Anyone who experiences acute or chronic pain knows it can take a toll and affect day-to-day activities. One disease, in particular, seems to appear more common in Alaska — Ehlers-Danlos syndrome — according to Dr. Nichelle Renk, who said she is the only EDS provider in the state.

“It is a connective tissue disorder,” Dr. Renk said, who works with Alpenglow Pain and Wellness in Anchorage. “Essentially, with EDS patients, their joints are loosey-goosey and that can cause quite a bit of problems.”

Those problems are typically associated with joint and muscular pain and issues with posture.

“EDS patients like to live at the end of range motion, so giving the shoulder (as) an example, it’s comfortable to be at that end, (but) the other end it’s not really comfortable or natural for them to maintain what’s considered a normal alignment for the joint,” she said. “It requires a lot more work, so they get fatigued very easily from all of those muscles having to engage throughout the day ... so they have a lot of muscle tension and pain from the muscles as well.”

There are 13 types of EDS. Renk focuses on the most common one called Hypermobile EDS. She said about 90 percent of people with Ehlers-Danlos Syndrome have that particular one.

“Fortunately, it’s the most mild type and it’s associated with a normal life span,” she said. “Those other more rare types can have some pretty serious cardiovascular problems and early death, unfortunately.”

Hypermobile EDS is treatable, but because of the overly flexible ligaments in EDS patients, Renk said she emphasizes the importance of physical strength for her patients.

”Patients tend to be poor healers. They take longer to recover from exercise, so I always ask patients to pace themselves,” Renk said. “I like high reps, low weights close to the body, and yoga pilates is okay as long as the focus is more strength rather than flexibility. Flexibility is a lengthening of the muscle, we don’t want that in addition to the ligament laxity issue.”

Renk also prescribes patients different types of bracing or garments to offer joints more stability. She’s even referred them to physical therapy, massages and acupuncture, as well as prescribing medications.

As with all medical conditions, people should talk to a medical professional first to see what the best option is for them.

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