Key Takeaways
- Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders that affect the body's collagen, leading to hypermobile joints, fragile skin, and tissue laxity.
- EDS is caused by genetic mutations that affect collagen production; most forms are inherited in an autosomal dominant pattern, though some are autosomal recessive.
- Although EDS is a lifelong condition, early diagnosis and supportive pediatric therapy can significantly improve function and help prevent injury.
- Because symptoms can be subtle or mistaken for clumsiness, EDS is often diagnosed later than ideal, making attentive evaluation important.
- Therapy for children with EDS focuses on joint protection, muscle support, posture, and coordination, and a multidisciplinary approach often yields the best outcomes.
Frequently Asked Questions
What is Ehlers-Danlos Syndrome in children?
Ehlers-Danlos Syndrome is a group of heritable connective tissue disorders that affect collagen in the body, leading to hypermobile joints, fragile skin, and tissue laxity. In children it can result in frequent joint injuries, developmental delays, and motor coordination challenges.
What are the signs of EDS in my child?
Common signs include joint hypermobility (often able to "double joint" or dislocate easily), frequent sprains or joint pain, delayed gross and fine motor development, fatigue and poor endurance, skin that bruises easily or feels soft and stretchy, poor wound healing, flat feet or scoliosis, and anxiety or proprioceptive challenges.
How is EDS diagnosed in children?
Diagnosis typically involves a detailed medical and family history, a Beighton score to assess joint hypermobility, genetic evaluation for certain subtypes, and a physical exam of skin texture, scarring, and joint integrity. Children with suspected EDS should be evaluated by a geneticist, rheumatologist, or specialized pediatrician.
Can therapy help a child with EDS?
Yes. Therapy focuses on joint protection, muscle support, posture, and coordination, and a multidisciplinary approach often yields the best outcomes. Occupational therapy can support fine motor skills and teach joint protection strategies, while physical therapy can build strength to support unstable joints and help prevent dislocations.
Is EDS inherited?
Yes. EDS is caused by genetic mutations that affect how the body produces collagen, and most forms are inherited in an autosomal dominant pattern, although some are autosomal recessive. A medical geneticist typically confirms the diagnosis using clinical criteria and, in many cases, genetic testing.


















































