Understanding Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders: Supporting Our Young Patients

May is + (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month, a time dedicated to increasing understanding of these complex connective tissue disorders that affect many children and adolescents. At LuskinOIC, we’re committed to providing specialized care for young patients navigating these challenging conditions.

What Are EDS and HSD?

Ehlers-Danlos syndromes are a group of hereditary disorders affecting connective tissues—primarily the skin, joints, and blood vessel walls. Hypermobility spectrum disorders represent a range of conditions related to joint hypermobility that don’t meet the criteria for EDS but still significantly impact quality of life.

These conditions manifest differently in each child, but common symptoms include:

• Joint hypermobility (often called being “double-jointed”)
• Joint instability and frequent dislocations
• Chronic pain
• Tissue fragility
• Early-onset osteoarthritis
• Delayed motor development
• Fatigue and poor stamina

The Pediatric Perspective

For children with EDS and HSD, everyday activities many take for granted can become challenging. Playground activities, sports participation, and even sitting at a desk for extended periods can cause pain or joint instability. Many of our young patients describe feeling different from their peers or frustrated by physical limitations.

Pediatric cases are particularly complex because symptoms often emerge during crucial developmental periods. As children grow rapidly, their hypermobile joints may become increasingly unstable, requiring specialized approaches to care that evolve with their changing bodies.

Our Approach at LuskinOIC

At LuskinOIC, we understand that addressing EDS and HSD requires a multidisciplinary approach. Our team works collaboratively to create comprehensive treatment plans that may include:

• Physical therapy: Custom-designed exercises to strengthen supporting muscles around hypermobile joints and improve proprioception (awareness of body position).
• Pain management: Evidence-based approaches to help children manage chronic pain while staying active and engaged.
• Orthotics and bracing: Custom-fitted supports to stabilize vulnerable joints during activities.
• Surgical interventions: When necessary for severe joint instability, our pediatric orthopedic surgeons provide specialized procedures designed with growing bodies in mind.

Supporting Your Child at Home

If your child has been diagnosed with EDS or HSD, these strategies may help support their daily functioning:

• Maintain open communication with schools about necessary accommodations.
• Encourage gentle, low-impact physical activities like swimming.
• Create consistent sleep routines to help manage fatigue.
• Help them develop self-advocacy skills to communicate their needs.
• Connect with support communities where they can meet others with similar experiences.

Raising Awareness and Building Understanding

One of the greatest challenges for children with EDS and HSD is that these conditions are often invisible to others. A child who appeared fine yesterday might experience a painful joint subluxation today, leading to misunderstandings about the variable nature of their symptoms.

This awareness month, we encourage families, educators, and communities to learn about these conditions and approach affected children with empathy and support. Small accommodations—like allowing short movement breaks during class or understanding modified participation in physical education—can make an enormous difference in a child’s daily experience.

The Champion’s Journey

Despite the challenges, we’ve witnessed remarkable resilience in our patients with EDS and HSD. Many develop creative adaptations, discover activities that work well for their bodies, and become advocates for others with similar conditions.

At LuskinOIC, we’re privileged to support these young champions on their journey, helping them build strength, confidence, and the specialized care they need to thrive—during awareness month and every day of the year.