Common Signs of Ehlers-Danlos Syndrome

If you’re like most people, you’ve probably never heard of the medical condition Ehlers-Danlos Syndrome or EDS. But chances are you’ve crossed paths with someone who had it but didn’t know it.

Although Hippocrates alluded to some symptoms of EDS as early as 400 BC, EDS wasn’t on the radar of the modern-day medical community until Dr. Edvard Ehlers and Dr. Henri-Alexandre Danlos first identified the condition in the early twentieth century. In this blog, Caryn McAllister, PT, DPT, and the team of movement experts at High Quality Home Therapy explain Ehlers-Danlos Syndrome and how it gets treated.

Ehlers-Danlos Syndrome explained

Ehlers-Danlos Syndrome is the medical term for 13 known hereditary connective tissue disorders.

Connective tissue works in the body to protect, support, and provide form and structure to organs and other tissues. Connective tissue also functions in the healing process by repairing damaged tissue. It also stores fat and transports nutrients and other substances between tissues and organs. Examples of connective tissue include fat, blood, cartilage, bone, and lymphatic tissue.

There is no known cure for Ehlers-Danlos Syndrome. The exact cause of EDS is not known. Most EDS cases are tied to genetic anomalies that keep connective tissue from working optimally.

At least one out of every 3,100 to 5,000 people suffer from the most common type of EDS called Hypermobile Ehlers-Danlos Syndrome or hEDS. Although considered relatively rare, the actual number of people with hEDS gets underestimated since many patients have mild symptoms that are often undiagnosed.

Collagen and Ehlers-Danlos Syndrome

Collagen is an essential protein that makes up one-third of the total protein in the body. You probably know collagen handles your skin’s firmness and elasticity, but how is it linked with Ehlers-Danlos Syndrome?

While it’s true that collagen provides skin elasticity, it’s also the leading component of connective tissue, creating strength, form, and support for muscles and bones. In Ehlers-Danlos Syndrome, the condition triggers variants in the genes that affect the function and structure of collagen and associated connective tissue proteins.

Commonly shared symptoms

Although each type of EDS often manifests differently from patient to patient, there are several similar symptoms regardless of the type of EDS, including:

Abnormally flexible joints, often resulting in pain or dislocations
Stretchy or fragile skin
Scarred or easily bruised skin
Skin that doesn't heal well
Muscle pain
Fatigue

Physical and occupational therapy can help

The good news is that skilled healthcare providers, such as physical therapists (PT) and occupational therapists, can help patients with Ehlers-Danlos Syndrome by addressing their symptoms.

At High Quality Home Therapy, our physical therapists create personalized exercise plans to address joint instability and joint and muscle pain. Exercises that concentrate on strengthening and stabilizing muscles and enhancing movement control can be helpful.

Similarly, our occupational therapy team develops personalized treatment plans for EDS. However, unlike the PT team, our occupational therapists focus on enhancing the patient’s ability to perform everyday tasks like driving, shopping, getting dressed, meal preparation, and personal hygiene – safely without harming themselves.

If you or someone you know has been diagnosed with Ehlers-Danlos Syndrome or exhibits symptoms, contact the movement experts at High Quality Home Therapy in Stamford, Connecticut, to learn how we can help. Call today or use our online tool to schedule an appointment.