Hypermobility/Ehlers-Danlos Syndrome Educational Handouts

(Handouts created by Dr./Prof. Leslie Russek, unless stated otherwise, hover over bolded words for links)

General Information

  1. List of Dr. Russek's key handouts, with scancode for Dr. Russek’s website.

  2. "Overview of Hypermobility Spectrum Disorder": Overview of HSD/hEDS signs and symptoms, diagnosis and PT management.

  3. "Why Zebras are not Horses": leaflet explaining why people with HSD cannot be treated the same as everyone else.

  4. HSD in children and adolescents: Overview of issues that can present in children and teenagers with HSD/hEDS.

  5. Checklist of physical therapy treatment approaches for HSD/hEDS. It is sometimes helpful to know what a PT might be able to help with.

  6. List of HSD and POTS disability/accommodations resources. Resources with information about accommodations and disability for people with HSD/hEDS and POTS.

  7. Chronic Pain Partners surgical planning booklet. Excellent patient information for EDS patients preparing for surgery.

Self-Care Strategies

Pain Management

  • Pain self-care plan. Create a pain self-care plan to improve your pain management.

  • Flare self-management plan. Create a flare management plan so you know what works when you have a flare.

  • Heart-rate variability biofeedback. Biofeedback to increase activation of your parasympathetic nervous system can help quiet sensitive nerves and decrease pain.

  • Free chronic pain management apps for teens There are several good pain self-management apps for teens that teach self-care principles in fun and age-appropriate ways.

  • Nociplastic pain. Explains pain mechanisms, including nociplastic pain. If you want to harness the power of the mind-body connection, the Curable(TM) app provides evidence-based strategies and guidance. Note - patients can get 6 weeks of free access to Curable through a participating clinician. Contact Dr. Russek if you are interested: Lrussek@clarkson.edu.

  • Topicals for pain management. Topicals can be a helpful addition to your pain management toolkit. Different topicals tend to work best for different problems, but trial and error is a good way to figure out what works for you.

Exercise Handouts

Managing Dysautonomia/Postural Orthostatic Tachycardia (POTS) and Mast Cell Activation Disorder (MCAD)

Helpful HSD/EDS Links for both patients and health care providers

(These are not handouts created by me or Dr. Russek, but are helpful):

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

MCASis also common in people with HSD/EDS. MCAS presents as migraines, hives, itching, flushing, severe allergies, irritable bowel, chronic fatigue, chronic pain, medication sensitivity, chemical sensitivity, brain-fog and more.

  • A link for lectures provided by Dr. Leslie Russek on all things EDS here

All above links curated by and described by Dr. Leslie Russek with her permission.