Hypermobility/Ehlers-Danlos Syndrome Educational Handouts
Handouts created by Prof. Russek.
General Information
"Overview of Hypermobility Spectrum Disorder": Overview of HSD/hEDS signs and symptoms, diagnosis and PT management. "Why Zebras are not Horses": leaflet explaining why people with HSD cannot be treated the same as everyone else.
HSD in children and adolescents: Overview of issues that can present in children and teenagers with HSD/hEDS.
Checklist of physical therapy treatment approaches for HSD/hEDS. It is sometimes helpful to know what a PT might be able to help with.
Surgical precautions for people with HSD/hEDS. A good discussion to have with your health care team before (and after) surgery.
Self-Care Strategies
- Breathing.Breathing incorrectly can increase pain sensitivity, lumbar instability, headaches, jaw pain, and more.
- Posture. Good posture decreases strain on muscles and joints, and can prevent many problems.
- Joint Protection Strategies Learning to protect your joints and muscles is the first step towards healthier and stronger joints.
- Sleep Hygiene and Positioning. People with HSD often struggle to get a good night's sleep. There are strategies for positioning and protecting your body in bed to minimize pain, and sleep hygiene strategies to enhance sleep.
- Headache Trigger Points. Many headaches are caused by trigger points, especially when muscles are overworked due to HSD.
- Temporomandibular Disorder (TMD).TMD, or TMJ problems, are common in HSD. There are many things you can do to care for your jaw.
Managing Dysautonomia/Postural Orthostatic Tachycardia (POTS) and Mast Cell Activation Disorder (MCAD)
Note: This is information I share with my physical therapy patients because they find it useful. I am neither a physician nor researcher in the areas of POTS or MCAD, but this information is based on published research when available. See links, below, for more info about POTS and MCAD.
Checklist for POTS self-care management.
Flow charts for POTS management, including fatigue and sleep.
Suggestions for managing MCAS.
Helpful HSD/EDS Links for both patients and health care providers:
Postural Orthostatic Tachycardia Syndrome (POTS) resources. POTS is common in HSD, and not always diagnosed. It presents as severe fatigue, poor tolerance to exercise, headaches, heart palpitations, anxiety (even panic attacks), brain-fog, fainting, nausea, GI problems and more.
Mast Cell Activation Syndrome/Disorder (MCAS/D) resources. MCAS is also common in people with HSD/EDS. MCAS presents as hives, itching, flushing, severe allergies, irritable bowel, chronic fatigue, chronic pain, headaches, brain-fog and more.