How hEDS Impacts Work and School Functioning

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Hypermobile Ehlers-Danlos syndrome (hEDS) can significantly affect a person’s ability to participate in work or school due to symptoms such as chronic pain, fatigue, joint instability, dizziness, and cognitive impairment. Associated conditions—including POTS, gastrointestinal dysfunction, sleep disturbances, and psychiatric diagnoses like anxiety or depression—can further interfere with daily activities. The impact of hEDS varies by age and setting, but participation problems are common across all life stages.

Children and Adolescents: School Challenges and Developmental Needs

• Functional Impacts

  • Many children with hEDS experience chronic pain, fatigue, and joint instability that make sitting, writing, or participating in PE difficult

  • Some children are initially seen as athletic due to their flexibility, but may develop more significant symptoms in adolescence

  • “Invisible” symptoms such as dizziness, headaches, and cognitive fog can result in underestimation of needs by teachers or peers

  • Frequent absences are common due to medical appointments, pain flares, and fatigue

  • Cognitive symptoms—including difficulty with focus, memory, and processing speed—can interfere with academic progress

• Prevalence and Contributors

  • Up to 81% of pediatric patients in large studies are female.

  • Fatigue and pain are the most common drivers of school absences.

  • Anxiety and depression are prevalent and further affect quality of life and classroom participation.

  • Delayed diagnosis is common due to lack of validated pediatric criteria, which can lead to delayed accommodations.

• Helpful Accommodations

  • Flexible attendance or remote learning options

  • Rest breaks during the school day and access to a quiet space

  • Extended time on tests or assignments

  • Use of laptops, speech-to-text software, or note takers

  • Assistive tools for handwriting (wide-grip pens, slant boards)

  • Modified physical education requirements

  • Elevator access and classroom location changes

• Recommended Support

  • Physical therapy to address joint stability, strength, and posture

  • Occupational therapy for handwriting, seating adaptations, and energy management

  • Psychological support for anxiety, depression, and adjustment to chronic illness

  • Educational plans such as IEPs or 504s tailored to individual needs

  • Parent and teacher education to reduce stigma and misunderstanding

Adults: Work Limitations, Career Barriers, and Independence

• Functional Impacts

  • Adults with hEDS often experience widespread pain, joint instability, and fatigue that interfere with workplace functioning

  • Dizziness, cognitive fog, and orthostatic intolerance (e.g., POTS) can make sustained productivity and concentration difficult

  • Repetitive strain, prolonged sitting or standing, and stress may worsen symptoms over time

  • Many adults face declining physical function, especially when comorbidities such as GI issues, migraines, and psychiatric conditions are also present

• Prevalence and Contributors

  • About 53% of adults report that hEDS negatively affects work or education

  • Over 65% report significant mobility disability, and 43% have severe chronic pain

  • Females are more commonly affected and may face additional challenges related to underrecognition or gendered dismissal of symptoms

  • Psychiatric comorbidities—such as anxiety and depression—are reported in over 70% of adults and further impact functioning

• Workplace Accommodations

  • Flexible schedules, part-time options, or hybrid/remote work

  • Ergonomic furniture (adjustable chairs, split keyboards, sit/stand desks)

  • Modified job duties to avoid repetitive tasks or physical strain

  • Built-in breaks to manage pain, fatigue, or dizziness

  • Occupational therapy support for environmental restructuring and energy conservation

• Recommended Support

  • Physical therapy for injury prevention and functional capacity

  • Occupational therapy for job-specific adaptations and energy pacing

  • Medical treatment for associated conditions like POTS, migraines, mast cell symptoms, or gastrointestinal dysfunction

  • Psychological therapy (e.g., CBT, ACT) for coping with chronic pain and identity challenges

  • Peer support and patient-centered care to reduce isolation and improve self-efficacy

Older Adults: Cumulative Effects and Aging with hEDS

• Functional Impacts

  • Some older adults with hEDS experience reduced joint flexibility with age, but chronic pain, fatigue, and comorbidities often persist

  • Mobility may decline due to joint damage, osteoarthritis, or muscle weakness

  • Decreased stamina and increased reliance on assistive devices may limit participation in work, volunteering, or social activities

  • Some individuals adapt well and report improved psychological coping over time

• Support Needs

  • Ongoing management of pain, fatigue, and comorbid conditions

  • Support with mobility aids and fall prevention

  • Physical and occupational therapy to maintain strength and independence

  • Age-appropriate accommodations and care coordination

  • Provider education to avoid misattributing symptoms to aging alone

Summary

Hypermobile Ehlers-Danlos syndrome significantly interferes with school and work across all age groups, with day-to-day fluctuations and long-term limitations driven by chronic pain, fatigue, cognitive symptoms, and a range of comorbidities. While some individuals are able to participate fully with minimal support, many require individualized accommodations and multidisciplinary care. Early diagnosis, proactive support, and education for schools and employers are essential. Across the lifespan, meaningful participation remains possible with appropriate physical, psychological, medical, and environmental interventions.