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 the "Hypermobility Patient Handouts" page, link above.

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
• List of Dr. Russek's key PATIENT handouts, with scancode for website. Feel free to print this and give to patients.
• "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:
• Upright MRI measurements for UCI.
• Sample MRI request for patients with suspected UCI.
• Template report of upright MRI findings.
• 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

• Checklist for POTS self-care management.
• Suggestions for managing MCAS.
• How to check your medications for (MCAS) sensitivities.

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.
• FFF Pelvic neutral video.