Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome is a group of disorders that results from abnormal collagen which is a major protein that strengthens skin and forms connective tissues, such as tendon, ligaments, muscles and bone. It can cause extremely loose joints, weak muscle tone, scoliosis (a curve in the spine), or very fragile skin that easily tears or bruises. Children with this condition can also have a range of health issues, such as small, fragile blood vessels, slow wound healing, easily sustained injuries and pain.

Causes

Many forms of Ehlers-Danlos syndrome are due to genetic defects, but in other cases, the cause remains unknown.

Symptoms

Common signs and symptoms related to EDS are:

• Overly flexible and loose joints
• Pain in the joints or muscles
• Frequent dislocations
• Elastic skin that bruises easily and appear translucent

Diagnosis

Early diagnosis is important for children with EDS to help ensure they get the care they need. To determine if your child has EDS, your specialized doctor will complete a physical exam, evaluate your family medical history and review all your child’s symptoms. Your doctor may recommend a series of tests to rule out other similar conditions such as genetic tests, a skin biopsy and echocardiogram.

Treatment

Ehlers-Danlos syndrome can’t be cured. Therefore, the goal of treatment is to reduce your child’s risk for injuries and complications, as well as reduce pain. Treatments your doctor may offer or recommend to treat your child’s EDS include:

• Physical therapy
• Bracing
• Prescription medications, such as blood pressure drugs or pain medications