Iowan’s diagnosis expedited through EDS support groups

Ehlers-Danlos Syndrome is not a “rare” disorder but instead a disorder that is “rarely” properly diagnosed. This is a story of a lady who discovered her condition through her own research and sought out the help of online EDS support groups.


Article by KRISTIN BUEHNER published in the Globe Gazette

“MASON CITY — Amber Lenius was still a teenager when she noticed her knees and ankles seemed prone to frequent injury, the rural Mason City woman said.

But it was only in October 2012 that Lenius, formerly of Bremer County, learned the source of her problems was Ehlers-Danlos syndrome, a rare connective tissue disorder.

“My connective tissue is like a used-up rubber band,” Lenius, 25, explained.

Ehlers-Danlos syndrome is a group of inherited disorders that affect the connective tissues, primarily the skin, joints and blood vessels, the Mayo Clinic reports.

People with Ehlers-Danlos usually have overly flexible joints and stretchy, fragile skin.

It is found in an estimated 1 in 2,500 to 1 in 5,000 people.

The fragile skin and unstable joints are the result of faulty collagen, a protein that acts as a glue in the body.

There is no cure and no treatment.

The disorder was named for two doctors, Edvard Ehlers of Denmark and Henri-Alexandre Danlos of France, who identified it at the turn of the 20th century.

Two years ago, after doing research on her own about the symptoms she was experiencing, Lenius learned of others who had EDS. One of them told her about Dr. Pamela Trapane, a pediatrician at the University of Iowa Hospitals and Clinics who has a specialty in clinical genetics.

It was Trapane who diagnosed Lenius’ EDS.

Lenius was diagnosed with the EDS hypermobility subtype, meaning that her joints are most affected.

“My biggest problems are my hips and my knees,” she said. “It’s just really painful.”

She also has frequent heart palpitations, headaches and dizziness and osteoarthritis in her knees and hands.

She bruises easily.

“I have a lot of gastrointestinal issues and very poor vision,” she said.

Dr. Trapane suggested over-the-counter pain medications and physical therapy to help lessen the pain. Lenius found that water therapy, in particular, “helped a lot.”

“All you can do is to treat the symptoms as they happen and treat injuries as they happen,” she said.

A stay-at-home mother of two daughters, Eden, 4, and Nora, 3 months, Lenius has been advised to avoid painful activity.

She uses a forearm crutch, a device that helps prevent her hip from dislocating when standing or walking.

“It mostly helps with the pain of walking since not as much pressure is placed on that side,” she said.

Lenius belongs to state and national online support groups for Ehlers-Danlos and is a member of the Ehlers-Danlos National Foundation.

“(It) has been absolutely vital in helping me battle EDS,” she said.

“I’m taking it one day at a time,” she said.

She hopes her story may help others who have experienced similar symptoms.

“If you think you may have (EDS), talk to your doctor,” Lenius said. “Be your own advocate.”

She also hopes to make more health care professionals aware of Ehlers-Danlos syndrome.

“It seems every time I go to a new doctor, they don’t know what it is.”

Amber has joined support groups to help her deal with her condition.

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