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Hypermobility Spectrum Disorders Are More Common Than You Think. Don't Miss or Mistreat Them

Wednesday, February 14, 2024: 8:00 AM- 5:00 PM

Preconference Course 1 Day

Session Description:

Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome (HSD/hEDS) are common heritable connective tissue disorders resulting in varied musculoskeletal injuries, pain and disability due to fragile tissues, joint instability, proprioceptive deficits, biomechanical dysfunctions and movement-related fear. While many health care providers think HSD/hEDS is rare and they do not treat these patients, the condition is simply underrecognized. Prevalence of generalized hypermobility is 10-20% in adults and 34% in children. Although some hypermobile people are asymptomatic, many present in physical therapy, pain and pediatric clinics (55% of women, 39%, 21% of children). Failure to recognize and effectively manage HSD/hEDS leads to inappropriate treatment, iatrogenic injury and medical traumatization. Because PT is the cornerstone of HSD/hEDS management, PTs are ideally positioned to identify, manage and advocate for these patients. Connective tissue is everywhere; therefore, this condition can present with multisystem involvement including postural orthostatic tachycardia syndrome (POTS), gastrointestinal dysfunction, urogenital issues, mast cell activation, fatigue, poor tissue healing, central sensitization and neurosensitivity. This course, led by clinicians and researchers specializing in HSD/hEDS, will help PTs develop safe and effective evaluation and treatment programs for this challenging population so PTs can take the lead in recognizing and managing these under-recognized and potentially disabling conditions.

Session Outline: 

8:00-9:00 Introduction to pathophysiology, etiology, epidemiology, diagnostic criteria and clinical presentation of Hypermobility Spectrum Disorders and hypermobile Ehlers-Danlos Syndrome (HSD/hEDS)

This session will present the current understanding of pathophysiology and clinical presentation based on the dramatic increase in research and publications about HSD/hEDS in the past 10 years. We will go beyond the 2017 hEDS diagnostic criteria to discuss the evolving criteria for HSD and assessment of multisystem involvement using the Spider chart and other assessment tools. Case studies will provide examples of common patient presentation.

9:00-9:30 (Lab) Application of diagnostic criteria

Hands-on experience will improve participants’ confidence in applying the 2017 hEDS diagnostic checklist, as well as a variety of hypermobility assessment tools, including the Beighton score, Lower Limb Assessment Score, and Upper Limb Hypermobility Assessment Tool. 

9:30-10:00 Common comorbidities: dysautonomia, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS)

Dysautonomia (especially POTS) and MCAS are common comorbidities of HSD/hEDS, causing symptoms of fatigue, exercise intolerance, sleep disturbance, trouble concentrating, and anxiety, food, medication and chemical sensitivities. Case studies will demonstrate common presentation of comorbidities in this populations.

10:00-10:15 Break

10:15-11:15 Beyond Diagnosis: Physical therapy examination and evaluation of patients with HSD/hEDS and POTS

Diagnosing HSD/hEDS is just the first step; we then need to identify the causes for specific symptoms and functional deficits. This section will identify common biomechanical and neuromuscular deficits leading to instability and excessive stress on hypermobile tissues. This session will present tests and measures to better assess contributing factors for pain and functional limitations in these patients. We will discuss assessment of common orthopedic presentations in HSD/hEDS including common joint subluxations, nerve entrapments, and imbalances between hypo and hypertonic muscles, and differentiate among pain mechanisms (nociceptive, neuropathic, nociplastic) to guide intervention. We will continue to develop case studies relating typical PT findings to clinical presentation.

11:15-12:00 (Lab) Application of PT examination techniques

This lab will allow participants to practice tests that they might not currently use, and gain expert insight into common deficits in this population. Participants will rotate through activities including: motor control tests; laser joint position testing; length-strength and hyper/hypotonicity assessment.

12:00-1:00 Lunch break

1:00-2:00 Musculoskeletal interventions for HSD/hEDS and POTS through the life-span

An appropriate PT management approach includes extensive patient education, neuromuscular re-education, therapeutic exercise, with judicious use of manual therapy and bracing. The approach to exercise in this populations needs to address instability, through managing decreased proprioception, motor control and tissue strength. Pain management requires a biopsychosocial approach matched to the mechanisms of pain present. Because HSD/hEDS is a chronic condition, treatment needs to emphasize teaching patients self-management skills. This session will end with participants working in small groups using clinical decision-making skills to develop treatment plans for our case studies.

2:00-3:00 (Lab) Hands-on practice of interventions for HSD/hEDS

Hands-on lab activities give participants the opportunity to practice intervention techniques that may be new or implemented differently in this population, and to gain expert insight into common challenges faced by people with HSD/hEDS. Participants will learn to identify common movement faults that may compromise patient progress or lead to ‘good’ interventions having adverse effects. Participants will rotate through activities including: common exercise errors in HSD/hEDS; safe manual therapy; laser proprioceptive training; pressure biofeedback for motor control training.

3:00-3:15 Break

3:15-3:45 (Lab) Hands-on practice for HSD/hEDS: Refining skills

This lab session gives participants a chance to take a deeper dive into any 2 of the following options: POTS NASA Lean Test; more common exercise errors; motor control training; safe manual therapy.

3:45-4:15 Holistic management: sleep hygiene, stress management, coping skills, lifestyle modifications

HSD/hEDS affects all aspects of life; therefore, it requires a biopsychosocial management approach. Sleep disorders are common and amplify pain and fatigue. Psychologically informed PT interventions can help patients develop effective self-management strategies. Lifestyle modifications must respect the pathophysiology and be adapted to the individual. Participants will have access to patient educational materials.

4:15-4:45 Integrating with other providers: medical management, etc.

HSD/hEDS affects multiple body systems resulting in many patients having a team of health care providers. PTs with expertise in HSD/ hEDS can advocate for appropriate biopsychosocial care in collaboration with the health care team.

4:45-5:00 Summary and QA

Objectives:

  • Apply current diagnostic criteria to identify patients with Hypermobility Spectrum Disorder (HSD) hypermobile Ehlers-Danlos Syndrome (hEDS), and Postural Orthostatic Tachycardia Syndrome (POTS).
  • Describe multisystem presentation of patients with HSD/hEDS through the lifespan, including pediatric, adolescent, and adult patients using a biopsychosocial model.
  • Demonstrate an effective examination and evaluation for patients with HSD/hEDS, including common comorbidities.
  • Develop effective, safe and comprehensive biopsychosocial physical therapy management approaches for individuals with HSD/hEDS and POTS, including patient education, motor control training, therapeutic exercise, manual therapy and collaboration with other health care providers.

Speakers

  • Leslie N. Russek, PT, DPT, PhD (Clarkson University)
  • Patricia Jean Stott, PT, ATC, MS
  • Heather Anne Purdin, PT, MSPT, MS
  • Ryan Hadley Wood, PT, DPT, MHA (Forefront Therapy)