Neurological Balance and Medical Disorders

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Ehlers-Danlos Syndrome in Children: Symptoms, Types & Therapy Support

Authored by: The DrSensory Editorial Team

Reviewed by: 🛡️ DrSensory Clinical Review Board

Last updated: June 2025

All medical content on this page has been reviewed and approved by licensed Doctors on the DrSensory Clinical Review Board. Our reviewers follow strict editorial standards and ensure alignment with current APTA guidelines, evidence-based practice, and orthopedic rehabilitation protocols.

14 min read

Understanding Ehlers-Danlos Syndrome in Children: Symptoms, Types & Pediatric Therapy Solutions

What Is Ehlers-Danlos Syndrome (EDS)?

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, this condition can result in frequent joint injuries, developmental delays, and motor coordination challenges.

While EDS is a lifelong condition, early diagnosis and supportive pediatric therapy can significantly improve function and prevent injury.

What Causes Ehlers-Danlos Syndrome?

EDS is caused by genetic mutations that impact how the body produces collagen, a key protein in connective tissues. There are multiple subtypes of EDS, each linked to specific gene variants. 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.

What Causes Ehlers-Danlos Syndrome?

EDS includes 13 recognized subtypes, but the most commonly diagnosed in children are:

Hypermobile EDS (hEDS)

  • Most common subtype
  • Characterized by joint hypermobility, chronic pain, and frequent dislocations
  • No known genetic marker (diagnosed clinically)

Classical EDS

  • Features stretchy skin, fragile tissue, and poor wound healing
  • May include visible scarring and joint hypermobility

Vascular EDS

  • Rare and serious
  • Can cause blood vessel and organ fragility
  • Requires strict medical monitoring

Each subtype may require a unique combination of therapy and medical care.

Signs and Symptoms of EDS in Children

  • EDS symptoms in children can vary by subtype and severity. Common signs include:
    • Joint hypermobility (can often “double joint” or dislocate easily)
    • Frequent sprains, strains, 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 or unusual scarring
    • Flat feet, scoliosis, or other postural issues
    • Anxiety or proprioceptive challenges
  • Because symptoms can be subtle or misattributed to “clumsiness,” EDS is often diagnosed later than ideal.

Diagnosing EDS in Children

Diagnosis typically involves:

  • Detailed medical and family history
  • Beighton score to assess joint hypermobility
  • Genetic evaluation for certain subtypes
  • Physical exam to assess skin texture, scarring, and joint integrity

Children with suspected EDS should be evaluated by a geneticist, rheumatologist, or specialized pediatrician. Early diagnosis allows families to create a therapy plan and minimize injury risk.

Therapy for Children with Ehlers-Danlos Syndrome

Therapies focus on joint protection, muscle support, posture, and coordination. A multidisciplinary approach often yields the best outcomes.

Occupational Therapy

  • Supports fine motor skill development (writing, buttoning, feeding)
  • Teaches joint protection strategies
  • Introduces adaptive equipment to ease daily activities
  • Builds proprioception and sensory-motor awareness

Physical Therapy (PT)

  • Improves muscle strength to support unstable joints
  • Enhances posture and alignment
  • Prevents joint dislocations through targeted movement routines
  • Assists with pain management and endurance training

Speech-Language Pathology (SLP)

  • Addresses feeding and swallowing difficulties (if present)
  • Helps manage speech articulation if jaw or facial tone is affected
  • Supports executive functioning if related issues are present (seen in some hEDS cases)

Therapists also help children develop self-regulation and pacing strategies, essential for managing chronic fatigue and pain.

How DrSensory Supports Families Affected by EDS

DrSensory helps families find pediatric therapy providers who understand the unique challenges of Ehlers-Danlos Syndrome. With our verified therapist database, you can:

  • Search for OT, PT, or SLP providers by location and specialty
  • View clinic details, availability, and therapist expertise
  • Schedule in-person or virtual therapy sessions
  • Learn from trustworthy condition-specific guides

📍 [Search Pediatric Therapists Near You →]

Frequently Asked Questions (FAQ)

Is Ehlers-Danlos Syndrome curable?

No, EDS is a lifelong genetic condition. However, symptoms can be managed through lifestyle modifications, therapy, and careful medical oversight.

How early can EDS be diagnosed in children?

Some signs may be evident in infancy or early childhood (e.g., motor delays, hypermobility), but many children aren’t diagnosed until school age. Early symptoms may resemble general “low muscle tone” or “clumsiness.”

Can my child with EDS participate in sports?

With supervision and proper physical conditioning, some children with EDS can participate in low-impact sports. However, contact sports or high-risk activities may increase injury risk and should be approached cautiously.

Why does my child with EDS fatigue so easily?

Children with EDS often use extra energy to stabilize their joints, compensate for poor proprioception, and manage chronic discomfort. A graded exercise plan and pacing strategies from a therapist can help.

Does EDS affect learning or school performance?

While EDS doesn’t directly affect cognition, chronic pain, fatigue, and coordination issues may impact writing, sitting tolerance, and stamina, leading to accommodations like 504 plans or IEPs.

This page provides general educational content and is not a substitute for professional medical advice. Always consult a licensed provider for diagnosis and treatment.

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