Hypermobility, Hypermobility Spectrum Disoders and Hypermobile EDS

Welcome Back Rheumatology Fans,Many of you will remember Mike from “Rheum Mates” which was a podcast series that we did a few years back. It is never boring chatting with him and so we discussed his PhD of all things which is on the sometimes spicy topic Hypermobility!2017 hEDS Criteria: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552 For case studies, webinars and a whole lot more - upgrade to the paid substack or enroll in my online course HEREBelow is an AI Summary Of The PodcastMikes PhD Focus & Research Direction* Original Aim: Investigate evidence for conservative (non-surgical, non-pharmacological) management of HSD/hEDS in adults.* Shifted Focus: Now looking at pediatric cohorts due to a lack of robust adult RCTs.* Adult studies are often low-quality, opinion-based, or use flawed inclusion criteria (e.g. only Beighton score).* Pediatric studies have more rigorous RCTs with better sample sizes and clearer outcomes.📚 Key Learnings from the Literature* Hypermobility ≠ HSD or hEDS:Many people are hypermobile (e.g., "double-jointed") but are asymptomatic and don’t meet diagnostic criteria.* Beighton Score Alone Is Inadequate:It doesn’t account for widespread pain or systemic symptoms—should not be used in isolation to diagnose HSD/hEDS.* Proper Criteria Needed:Diagnosis should be based on the Brighton criteria or 2017 hEDS criteria, not just joint flexibility.👶 Pediatrics & Early Diagnosis* Delay in Diagnosis Is Common:Many are misdiagnosed or ignored—sometimes taking up to 15 years to get a correct diagnosis.* Symptoms Often Multi-Systemic:Includes joint pain, dislocations, stretchy skin, fatigue, GI issues, POTS, anxiety, etc.* Early Diagnosis Matters:Leads to better patient outcomes, validation of their symptoms, and appropriate support.🧠 Clinical Challenges* Heterogeneity:Two people with hypermobility can present very differently—one may function as an elite athlete, the other may be disabled.* Unclear Why Some Develop HSD/hEDS:Genetics don’t yet explain it fully. Severity of hypermobility does not predict chronic pain or dysfunction.🏃 Management & Treatment* Exercise & Education Are Key:Strong evidence shows structured exercise improves pain and function.* Two RCTs (Kemp et al. & PACL) showed general exercise programs work just as well as targeted ones in children with hEDS.* Surgery & Medication Less Effective:Lack of evidence supporting these as primary treatment options.* Athletes May Self-Manage by Staying Active:Gymnasts and dancers often remain asymptomatic due to regular strength and mobility training.✅ Clinical Tips to Avoid Missing Diagnoses* Distinguish Hypermobile Joints from HSD/hEDS:Most hypermobile individuals are healthy—don’t over-diagnose.* Use Full Diagnostic Criteria:Don’t rely on the Baten score alone; use Brighton or 2017 hEDS criteria.* Educate & Empower Patients:Reassure them that appropriate exercise and education can improve quality of life.* Recognize Impact of Delay:Long-term mismanagement leads to worsening symptoms, mental health issues, and loss of function. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit rheumatologyphysio.substack.com/subscribe