FOR MEDICAL PROVIDERS
The resources here are intended for use by qualified and licensed healthcare providers, who take full responsibility for how they use these resources. Nothing here should replace care from a qualified medical provider.
Patients should access other pages
Handouts created by Prof. Russek, unless stated otherwise.
General Information
Toronto Allied Health Workshop - Pediatric. Slides.
Toronto Allied Health Workshop - Adult. Slides.
PowerPoint & Lecture: Basics of HSD for Health Care Providers. Slides. Recording
"Why Zebras are not Horses": leaflet explaining why people with HSD cannot be treated the same as everyone else.
Checklist of physical therapy treatment approaches for HSD/hEDS. It is sometimes helpful to know what a PT might be able to help with.
List of HSD and POTS disability/accommodations resources. Resources with information about accommodations and disability for people with HSD/hEDS and POTS.
Hospitalization precautions for people with HSD/hEDS. A research-based listing of issues EDS patients may experience in the hospital, either for emergency care or for scheduled procedures. The following link is more appropriate for giving patients preparing for surgery: Chronic Pain Partners surgical planning booklet. .
Assessment Tools
Lower Limb Assessment Score (LLAS) video instructions created by Dr. Russek.
The Spider Questionnaire is a validated tool for assessing the range of symptoms common in HSD. (not created by Dr. Russek)
Casa Colina EDS Disability Score. 11-Question tool measuring symptoms and function. Scores range 11-111. Chai S, Roney P, Fagan J, Rosario ER. Assessment of a novel Ehlers-Danlos syndromes disability index. Front Rehabil Sci. 2024;5:1280582. doi:10.3389/fresc.2024.1280582. Shared according to CC-BY.
UCI in HSD Assessment and conservative care. Physical assessment and conservative management guide for upper cervical instability (UCI) associated with HSD. Based on publications below.
Russek LN, Block NP, Byrne E, et al. Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations. Front Med (Lausanne). 2023;9:1072764. doi:10.3389/fmed.2023.1072764.
Chalela S, Russek L. Presentation and physical therapy management using a neuroplasticity approach for patients with hypermobility-related upper cervical instability: a brief report. Frontiers in Neurology. epub before print. 2024;15doi:10.3389/fneur.2024.1459115.
FYI: A very comprehensive patient guide to EDS cervical instability by EDSawareness.
Wendy Wagner, PT, has worked with Dr. Frasier Henderson to create guidelines for imaging of potential UCI in EDS. The following 3 forms are from her, with permission:
A neuro symptom checklist to help identify what EDS-related neurological conditions are related to which symptoms. Created by Dr. Russek based on presentations from Brianna Cardenas, DMSc, PA-C, ATC.
A guide to Whiplash assessment and treatment. While not specifically for people with HSD, it has relevant information, such as how to perform cervical sensory motor training and how to integrate stress innoculation into patient care. Compiled by the Australian whiplash experts. Whiplash Resources for Clinicians.
Treatment Resources
Sleep Checklist. Sleep is critical to good health. This checklist of sleep promoting strategies can make sure you don't overlook any options.
Headache Diary. A headache diary can help you identify what might be causing or aggravating your headaches.
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.
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.
Starting to Exercise Ideas. Some ideas to help you get started on exercise: how to deal with fatigue, pain, and fear of movement.
Starting to Exercise Worksheet. It can be difficult to exercise or be active when you have HSD. This worksheet helps people identify and overcome roadblocks to being more active.
The Zebra Club. a Pilates-based exercise app developed specifically for people with HSD. Handout explaining The Zebra Club
POTS and MCAS Resources
Not created by Dr. Russek:
POTS pharmacological treatment recommendations. From Blitshteyn S, Whiteson JH, Abramoff B, et al. Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of autonomic dysfunction in patients with post-acute sequelae of SARS-CoV-2 infection (PASC). PM R. Oct 2022;14(10):1270-1291. doi:10.1002/pmrj.12894
The Validated Mast Cell Activation Questionnaire. can be used to determine whether MCAS is likely, if the score is ≥14. Patients do not need to know the answers to lab or imaging tests to use this. Questionnaire from Afrin L, Molderings GJ. A concise, practical guide to diagnostic assessment for mast cell activation disease. World J Hematol. 2014;3(1):1-17.
MCAS medication recommendations From The Mast Cell Disease Society.
Helpful HSD/EDS Links for both patients and health care providers. (These are not handouts created by me, but are helpful links):
The EDS GP ToolkitThis website from Ehlers-Danlos Society, UK, has many excellent resources EDS healthcare providers.
The Ehlers-Danlos Society, provides comprehensive resources and support for the Ehlers-Danlos syndromes and hypermobility spectrum disorders, with a mission to advance care, access, research, and education.
Bendy Bodies Podcast, has expert physician Dr. Linda Bluestein interviewing other medical experts about a range of HSD topics.
School Toolkit for HSD/EDS. Great ideas to help kids succeed in school.
NASEM Report on HSD/EDS and disability. The National Academy of Science, Engineering and Medicine report that I helped create is a comprehensive overview of functional limitations that may lead to disability people with HSD/EDS. It also lists many potential accommodations.
www.potsuk.org POTS-UK
http://www.dysautonomiainternational.org Dysautonomia International.
The Disautonomia Support Network, Has many excellent resources about management of and accommodations for dysautonomia. Click on the Resources tab.
https://tmsforacure.org The Mast Cell Disease Society.
https://www.mastzellaktivierung.info/en/introduction.html. Mastzellactivierung.info is one of the original MCAS resources. It is in English.
Hypermobility/Ehlers-Danlos Syndrome Educational Handouts
All handouts created by Prof. Leslie Russek of Clarkson University, unless stated otherwise…
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.
List of HSD and POTS disability/accommodations resources. Resources with information about accommodations and disability for people with HSD/hEDS and POTS.
Chronic Pain Partners surgical planning booklet. Excellent patient information for EDS patients preparing for surgery.
Hospitalization precautions for people with HSD/hEDS. A research-based listing of issues EDS patients may experience in the hospital, either for emergency care or for scheduled procedures.
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.
Braces and Splints Braces and splints can help protect 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.
Sleep Checklist. Sleep is critical to good health. This checklist of sleep promoting strategies can make sure you don't overlook any options.
Headache Trigger Points. Many headaches are caused by trigger points, especially when muscles are overworked due to HSD.
Headache Diary. A headache diary can help you identify what might be causing or aggravating your headaches.
Temporomandibular Disorder (TMD).TMD, or TMJ problems, are common in HSD. There are many things you can do to care for your jaw.
Upper cervical Instability. (UCI).People with hypermobility can sometimes have upper cervical instability. This handout is based on the recent article I co-authored. You can access the full article at Full text of UCI article. ..
A very comprehensive patient guide to EDS cervical instability by EDSawareness.
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
Starting to Exercise Ideas. Some ideas to help you get started on exercise: how to deal with fatigue, pain, and fear of movement.
Starting to Exercise Worksheet. It can be difficult to exercise or be active when you have HSD. This worksheet helps people identify and overcome roadblocks to being more active.
Augmented Reality Activities for Fitness. Staying stable and strong doesn't need to be boring. Some augmented reality games, using free apps on your smartphone, tablet, or projected on your TV can be healthy and fun!
Managing Dysautonomia/Postural Orthostatic Tachycardia (POTS) and Mast Cell Activation Disorder (MCAD)
Note: This is information I share with my physical therapy patients to help them use self-care strategies. I am neither a physician nor researcher in the areas of POTS or MCAD. However, this information is based on published research when available. See links, below, for expert info about POTS and MCAD.
Flow charts for POTS management, including fatigue and sleep.
Suggestions for managing MCAS. From tmsforacure.com: MCAS medication recommendations
Helpful HSD/EDS Links for both patients and health care providers. (These are not handouts created by me, but are helpful links):
The Ehlers-Danlos Society, Has many excellent resources for all forms of EDS. It also has a list of EDS healthcare providers, and support groups in the US. Based in the US.
Bendy Bodies Podcast, has expert physician Dr. Linda Bluestein interviewing other medical experts about a range of HSD topics.
Hypermobility Syndromes Association (HMSA). This site has an excellent section for hypermobile kids and teens. Based in the UK.
Educator's and Parent's Guide to Children with EDS, includes suggested modifications and accommodations for children in school.
School Toolkit for HSD/EDS. Great ideas to help kids succeed in school.
The Ehlers-Danlos Syndrome Toolkit. Information about diagnosis, management and available resources intended for primary care and other health providers.
NASEM Report on HSD/EDS and disability. The National Academy of Science, Engineering and Medicine report that I helped create is a comprehensive overview of functional limitations that may lead to disability people with HSD/EDS. It also lists many potential accommodations.
"Hypermobility Syndromes" booklet for patients. 27 pages discussing all aspects of hypermobility.
Inspire is an on-line support network for people with EDS
EDS-Support is another on-line support network for people with EDS
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.
www.potsuk.org POTS-UK
http://www.dysautonomiainternational.org Dysautonomia International.
The Disautonomia Support Network, Has many excellent resources about management of and accommodations for dysautonomia. Click on the Resources tab.
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.
https://tmsforacure.org The Mast Cell Disease Society.
https://www.mastzellaktivierung.info/en/introduction.html. Mastzellactivierung.info is one of the original MCAS resources. It is in English.
The Validated Mast Cell Action Questionnaire. can be used to diagnose MCAS if your score is ≥14. You do not need to know the answers to lab or imaging tests to use this. This questionnaire can be helpful if you are unable to see an MCAS specialist - bring the completed questionnaire to your primary care, allergist, etc. to begin a discussion about MCAS.
The Quick Environmental Exposure and Sensitivity Inventory, or QEESI©. is a questionnaire to assess chemical sensitivity, which is commonly seen in MCAS. The spider web drawing can help you identify what systems (e.g., GI, skin, brain) are most affected by your MCAS. This questionnaire can also be helpful if you are unable to see an MCAS specialist - bring the completed questionnaire to your primary care, allergist, etc. to begin a discussion about MCAS.