How Are hEDS and HSD Diagnosed in Children and Adolescents?

Children are naturally more flexible than adults, and this flexibility often decreases as they grow. However, when joint hypermobility is accompanied by recurrent injuries, persistent pain, severe fatigue, or interference with daily activities, it requires a medical evaluation. Diagnosing hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) in young people involves carefully distinguishing normal developmental flexibility from symptomatic instability. A pediatric clinician will assess the child’s joints, skin, and overall health to determine the cause of their symptoms ^[1].

Normal Flexibility vs. Problematic Hypermobility

Joint flexibility is common in childhood and typically decreases with age ^[2]. Because of this natural flexibility, applying adult diagnostic standards to children can lead to misclassification ^[1].

To identify generalized joint hypermobility (GJH)—a condition where flexibility is widespread across the body—clinicians use a standardized screening tool called the Beighton score. For prepubertal children and biologically immature adolescents, a score of 6 or more out of 9 is generally considered the threshold for GJH ^{[1] [3]}.

However, the Beighton score is just a screening tool, not a diagnosis. A high score does not automatically mean a child has a medical disorder; asymptomatic hypermobility is often a benign trait ^[4]. Conversely, a score below the cutoff does not rule out localized hypermobility or clinically important symptoms in specific joints ^[2].

Note: Please do not attempt to forcefully test your child’s joints at home to see how far they bend, as this can cause pain or injury. Leave mobility assessments to a trained professional.

Signs It May Be More Than Just Flexibility

Parents should consider a professional evaluation if a child’s flexibility is paired with:

• Musculoskeletal issues: Frequent joint sprains, partial dislocations (subluxations), full dislocations, or persistent joint and muscle pain ^{[5] [6]}.
• Functional limitations: Clumsiness, difficulty with balance or coordination (impaired proprioception) that affects sports, school, or daily life ^[7].
• Extreme fatigue: Tiredness that is out of proportion to their activity level and does not improve with rest ^[6].

Other associated symptoms: Some children with hypermobility may also experience rapid heart rate or dizziness upon standing (orthostatic intolerance), gastrointestinal complaints, anxiety, or motor-coordination difficulties ^{[5] [8]}. These symptoms are common and nonspecific, meaning they do not prove that hypermobility is the cause. They require their own evaluation and are not required for a hypermobility diagnosis.

How Children and Adolescents Are Evaluated

The evaluation process depends on the child’s age and biological maturity, which is determined clinically. The strict 2017 diagnostic criteria for hEDS were designed for adults and can be difficult to apply to growing children, as systemic features of the condition can emerge over time ^[1].

What to Expect at the Appointment

To make the most of the evaluation, bring a timeline of injuries and symptoms, prior imaging or specialist reports, and a detailed family history. The clinician will review this history, perform a physical examination (including Beighton maneuvers and a skin review), and assess how symptoms impact the child’s daily function.

Biologically Immature Children

For biologically immature children, medical experts recommend using a specific pediatric hypermobility framework rather than an adult hEDS label ^[1]. This framework evaluates four areas:

1. Generalized joint hypermobility
2. Skin and tissue findings
3. Musculoskeletal complications (such as pain or joint instability)
4. Core comorbidities (other associated conditions)

Based on these areas, children are classified into categories such as pediatric GJH (if they are flexible but asymptomatic) or pediatric generalized HSD (if they have symptomatic complications) ^[1]. As the child develops, their diagnostic label may be reassessed.

Biologically Mature Adolescents

Once a clinician determines an adolescent is biologically mature, they can be formally evaluated using the 2017 adult hEDS criteria. These criteria require a specific combination of widespread hypermobility, systemic or family history features, and musculoskeletal complications, along with the exclusion of other diagnoses ^[9].

If a symptomatic adolescent does not meet the strict criteria for hEDS, the clinician may diagnose an appropriate subtype of HSD, provided the symptoms are not better explained by another condition ^{[10] [9]}. HSD is a real, clinical diagnosis, and treatment is based on the patient’s symptoms, not just the label.

Ruling Out Other Conditions

A critical part of the evaluation is ensuring that another condition is not causing the symptoms. The clinician will look for “red flags”—such as severe skin fragility, unique paper-like (papyraceous) scars, skeletal deformities, or serious heart issues—that might point to rarer, inherited connective tissue disorders like Marfan syndrome or classical Ehlers-Danlos syndrome ^{[1] [11]}.

They may also consider rheumatologic, neuromuscular, or other causes for pain and fatigue. Routine genetic testing is not recommended for hEDS or HSD alone, but it may be ordered if the clinician suspects a different genetic disorder ^{[10] [11]}.

Next Steps and Management

If your child is diagnosed with symptomatic hypermobility, the focus shifts to management and symptom relief. Do not force a child to exercise through an acute injury, severe pain, or a dislocation. Acute injuries always need a treating clinician’s advice.

When to Seek Prompt Care

Seek immediate medical attention for:

• An acute joint dislocation that does not go back into place
• Inability to bear weight or use a limb
• Sudden loss of sensation or circulation
• Fainting or new neurologic symptoms

For ongoing, chronic symptoms, complete rest or stopping all activities is rarely the answer. Instead, activity should be individualized and progressed gradually. A pediatric clinician or physical therapist familiar with hypermobility will likely recommend age-appropriate strengthening exercises and balance training to help stabilize the joints safely.