Key Takeaways
- Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders that affect collagen, leading to hypermobile joints, fragile skin, and tissue laxity.
- While EDS is a lifelong condition, early diagnosis and supportive pediatric therapy can significantly improve function and prevent injury.
- EDS is caused by genetic mutations affecting collagen production, and most forms are inherited in an autosomal dominant pattern, though some are autosomal recessive.
- Because symptoms can be subtle or misattributed to clumsiness, EDS in children is often diagnosed later than ideal.
- Therapy 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 (EDS) is a group of heritable connective tissue disorders that affect the 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 common signs of EDS in my child?
Common signs include joint hypermobility with easy dislocations, frequent sprains or joint pain, delayed gross and fine motor development, fatigue and poor endurance, and skin that bruises easily or feels soft and stretchy. Children may also have poor wound healing, flat feet, scoliosis, 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. Early diagnosis allows families to create a therapy plan and minimize injury risk.
What does occupational and physical therapy do for a child with EDS?
Occupational therapy supports fine motor skills like writing and feeding, teaches joint protection strategies, introduces adaptive equipment, and builds proprioception. Physical therapy improves muscle strength to support unstable joints, enhances posture and alignment, and works to prevent joint dislocations through targeted movement routines.


















































