EDS Echo - Multidisciplinary team practice Australasia

April-May 2024 - Module 1: Introduction to EDS and HSD

A useful and affordable way of increasing knowledge related to hypermobility for myself and for clients. I liked that this was delivered by clinicians in Australia and New Zealand so had local connections and information.

• Session 1: EDS and HSD: A focus on hEDS and HSD - overview of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD); diagnosis, spectrum of hypermobility, things to look out for and rule out, common complications and co-occurring conditions like POTS and MCAS. Helped me to understand the role of muscles and ligaments and how the ligaments are softer and unable to provide stability so muscles take on the stabilising role

• Session 2: Comorbidities and the Role of the MDT - need for multiple specialists due to the complex group of conditions that can con-occur with EDS/HSD, limitations of the current health system, need for building multidisciplinary teams and a call for improvements in services.

• Session 3: Ehlers-Danlos Syndromes: Rare Types

• Session 4: Assessment and Management of Pain – General Principles of Causation and Therapeutic Approaches - pain receptors, central sensitisation, tissue healing slower in EDS; management with exercise, medications, supplements, sleep, acupuncture, physio, massage, manipulative therapies, steroid injections, prolotherapy.

• Session 5: Assessment/Management of Fatigue – General Principles and Lifestyle Approaches / Sleep Disorders - many things contribute to fatigue; The Spider as a symptom impact tool to unpack what it contributing; fatigue in hEDS/HSD from ligament laxity, dysautonomia, MCAS, non-restorative sleep, hormonal or autoimmune dysfunction, intracranial pressure, nutritional/GI issues, mitochondrial dysfunction.

  • Look at signals for safety and danger, pillars of health from movement/exercise, sleep/rest, nutrition/hydration, socialising, work/study/parenting, foundation is pacing

  • Tools - activity diary, energy triggers, slow morning rise, parasympathetic activity/green list, social battery

June-July 2024 - Module 2: Physical and Mental Wellbeing

• Session 1 -  General Principles of Physical Therapy Management of HSD, hEDS and GJH – Pauline Slater – hypermobility spectrum disorders from bendy but well -> worsening dysfunction with syndromic aspects, hypermobility iceberg with lots of other things under the surface, common co-occurring conditions - EDS spectrum and spider: joint instability/neuromuscular, MCAS, pain, fatigue, GI issues, dysautonomia, headaches, anxiety, urogenital; need to look at things holistically; biopsychosocial model, ICF framework;

  • Approaches: education, pacing, self-care, postural and core awareness, motor control training, support for joints that need it, training for relaxation to decrease guarding, support improved postural alignment and movement, stabilising, strengthening, muscle flexibility within safe ranges, aerobic conditioning (POTS aware), integration into all functional activities, awareness of flares, injuries, setbacks, ongoing management, decrease peripheral and central pain and pain sensitisation, body maps.

  • So many good tips in here, I want to create myself a summary sheet and get more familiar with the Spider tool.

• Session 2: Mental Health Concerns – General Overview, Presenter: Susan Petrie (psychologist) – mental health conditions often secondary, POTS and MCAS symptoms can look like psychiatric conditions, complex trauma, high rates of diagnosed psychiatric conditions, grief process, tracking symptoms to tease it out, set smaller goals and show progress visually, ACT matrix, values towards and away moves, doing things that matter.

  • Interesting point that POTS and MCAS can look like psychiatric conditions, definitely something to be aware of. Good to see values and meaningful activity being discussed as this is a lot of what I do.

• Session 3: Neurodivergence, EDS and HSD – Pauline Slater, Bendy Bodies physio – within HSD population see increased rates of secondary disorders, EDS population 7x more likely to be autistic, 5x more likely ADHD; brain structure and hypermobility; interoception and sensory processing, communication differences, masking;

  • Tools and areas to focus on: supports to describe pain, symptoms wheels, sensory supports, creating safety, validation, body awareness, prioprioception, screening; need a multilayered lens.

  • I had lots of thoughts on this one and some strong feedback about how things were presented. Important to be aware of the overlap and bring neurodiversity affirming practice into the picture.

• Session 4: TMJ, dental concerns and speech and swallowing with EDS: a physiotherapists approach – Jessica Dowling and Karri Field – TMJ anatomy, the EDS jaw, jaw posture, common complaints, how to assess, treatment, when to refer.

  • Lots of this one went over my head anatomy wise, but useful to know about that side of things as it helps me to know what to look out for.

• Session 5: Collaborative Approaches – Supporting the Patient's Journey – Anita Crawshaw & Dr Fraser Burling – complexity of EDS, need to networks and collaboration, allied health’s role, who might be on the team, waiting times, lack of specialists.

September 2024 - Module 3: Neuromuscular Concerns