Ehlers-Danlos Syndrome in Children: Signs, Symptoms, and How Therapy Can Help
What Is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndromes, often called EDS, is a group of genetic connective tissue disorders that affect the body’s collagen and connective tissues. There are 13 known types of EDS, and each type can affect different parts of the body in different ways.
A closely related condition is Hypermobility Spectrum Disorders (HSD). Like EDS, HSD can impact connective tissues throughout the body and may cause a wide range of symptoms beyond joint problems.
Because connective tissue supports the skin, joints, muscles, organs, and blood vessels, children with EDS or HSD may experience symptoms in several body systems.
May is designated globally as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month. The movement is dedicated to educating the public, supporting patients, and raising funds for medical research
Common Signs and Symptoms of EDS and HSD
One of the most common signs of EDS is joint hypermobility, sometimes called being “double-jointed.” Children may seem unusually flexible, but that flexibility can also lead to joint pain, instability, and fatigue.
Some children may also experience:
- Stretchy or fragile skin
- Frequent bruising
- Joint pain or repeated sprains
- Poor balance or coordination
- Fatigue and low endurance
- Muscle weakness or low muscle tone
- Digestive issues such as constipation
- Headaches or dizziness
- Anxiety or difficulty regulating body temperature
- Delayed motor milestones like crawling or walking
EDS and HSD can affect each child differently. Some children may only have mild symptoms, while others may experience challenges that affect daily activities, school, sports, or play.
Signs Parents Should Watch For
If your child has several of the following symptoms, it may be worth discussing further evaluation with your pediatrician:
- Frequent joint pain or instability
- Joint dislocations or subluxations
- Easy bruising or unusual scarring
- Delayed potty training or bladder issues
- Chronic constipation
- Flat feet or unusual walking patterns
- Delayed motor development
- Poor endurance during physical activities
- Low muscle tone
- Vision problems or frequent headaches
- Swelling in the legs without a known cause
- Unusual flexibility combined with pain or fatigue
- Difficulty keeping up with peers on the playground
- Spinal curvature or posture concerns
In some cases, children with EDS may also experience heart, gastrointestinal, dental, or nervous system symptoms. Early recognition can help families access the right support and treatment sooner.
How Physical Therapy and Occupational Therapy Can Help
Physical therapy (PT) and occupational therapy (OT) can play an important role in helping children with EDS and HSD build strength, improve stability, and increase independence.
Benefits of Physical Therapy
A physical therapist can help your child:
- Strengthen muscles to better support unstable joints
- Improve balance and coordination
- Increase endurance for play and daily activities
- Develop safer movement patterns
- Improve walking, climbing, running, and playground participation
- Reduce pain and joint strain
Children with hypermobility often avoid activities that require weight-bearing through the arms or legs. For example, some children may skip crawling and prefer scooting instead. PT can help improve strength and confidence with movement while protecting joints from long-term wear and tear.
Benefits of Occupational Therapy
An occupational therapist can help children with:
- Dressing and self-care tasks
- Toileting routines
- Fine motor skills
- Hand strength and endurance
- Energy conservation and pacing strategies
- Joint protection techniques
- Modifying activities to reduce strain and fatigue
OTs can also help parents find practical ways to support their child’s independence at home, school, and in the community.
Additional Support and Specialists
Therapists can also help guide families toward additional resources and specialists when needed, including:
- Genetics specialists
- Rheumatologists
- Orthotists for braces or supports
- Pediatricians familiar with hypermobility disorders
Early diagnosis and intervention are important. The sooner a child receives support, the better their chances of improving strength, function, and quality of life. If you have any concerns about your child’s development, Kids Place Pediatric Therapy is here to help.
Helpful Resources
- The Ehlers-Danlos Society — Information, support groups, treatment resources, and provider directories
- Dr. Clair’s YouTube Video About EDS
References
American Journal of Medical Genetics Part C (Seminars in Medical Genetics), 175C:8–26 (2017)
