National clinic with South Bend roots
expands access to care for rare disease Ehlers-Danlos syndrome

SOUTH BEND, Ind. -- Joint pain, headaches, dizziness and allergic reactions can send many people to the doctor. For others, those symptoms are daily life with Ehlers-Danlos syndrome, a rare genetic disorder that specialists say is more common than once believed.

Nationally recognized in February during Rare Disease Month, Ehlers-Danlos syndrome, or EDS, affects connective tissue throughout the body. Though often described as rare — historically estimated at about one in 5,000 people — some physicians say growing awareness suggests it may affect far more.

Dr. James Harris, medical director of the Ehlers Danlos Syndrome Clinic, said the condition could impact as many as one in 3,000 people, and possibly one in 500 as diagnosis improves.

“That means in the Michiana area alone, at least 1,000 people could have it,” Harris said.

Harris, a board-certified allergist who practiced for nearly 40 years at South Bend Clinic, now leads the specialty clinic, which has roots in South Bend and provides care through telehealth nationwide.

He said he began recognizing patterns among patients who came to him for chronic hives and itching but also experienced joint hypermobility and other unexplained symptoms.

“As an allergist, I was seeing people with hives and itchy skin,” Harris said. “But I recognized that they had other conditions that went with it, and at one point I recognized they were mostly hypermobile too.”

Ehlers-Danlos syndrome is caused by defects in collagen production, leading to weakened connective tissue. Patients often experience overly flexible joints, frequent dislocations and stretchy skin. But the disorder can also affect the cardiovascular system, digestive tract and nervous system, causing migraines, heart complications and gastrointestinal problems.

On average, Harris said, patients wait more than a decade for an accurate diagnosis.

“They’ve been to a doctor and been gaslit. In our clinic, we listen because it’s a long story to tell. It’s complicated. We believe their story. We validate their symptoms.”

Lauren Borger, a student at the University of Notre Dame, recently received her diagnosis through the clinic after years of searching for answers.

“They really sat down with me and looked at me as a person, as a whole, and not just my paperwork,” Borger said.

With a long-term treatment plan in place, Borger said she has been able to continue her studies and pursue her goals despite ongoing health challenges.

“One of the first things Dr. Harris asked me was how my experience had been at other clinics,” she said. “I’ve seen a lot of physicians all over the country, and he really made sure I felt heard, which I think is something that has been lacking a lot in the medical system.”

There is no cure for Ehlers-Danlos syndrome, but specialists say early diagnosis and coordinated care can significantly improve quality of life.

Advocates, like those at The Ehlers-Danlos Society, continue working to raise awareness and connect patients with resources.

To learn more about Ehlers Danlos Syndrome, you can visit The Ehlers Danlos Society website here.

Anyone is eligible to apply for an appointment to be seen by a specialist at the Ehlers Danlos Clinic, which can done here.