I always welcome suggestions from the OT community for new handouts, so I was pleased to receive an email from an OT practicing in Tennessee whose patient with Ehlers-Danlos Syndrome (EDS) wanted to know why their condition did not have a treatment guide in the Occupational Therapy Toolkit.
Ehlers-Danlos Syndrome is a rare condition, and one I never treated as an OT. Since numerous occupational therapy interventions can ease symptoms, increase independence and improve quality of life, I will add EDS as a treatment guide in my next edition!
In the meantime, since the 8th edition was just released in 2024, I am devoting this post to Ehlers-Danlos Syndrome and OT interventions.
Ehlers-Danlos Syndrome is a connective tissue disorder that affects how the body makes and uses collagen. Currently 13 types of EDS have been identified; each with their own genetic cause. The most common symptoms include joint hypermobility, joint instability and pain, fragile skin that stretches, tears and bruises easily, along with systemic issues including fatigue, dizziness on standing and digestive concerns.
Some key ways occupational therapy can treat EDS patients include:
Joint Protection – OTs can help mitigate painful hyperextension and joint pain by modifying tasks, instructing in safe home treatment of joint pain, and designing and fitting splints.
Energy Conservation – OTs work with patients to manage fatigue with pacing and planning strategies. Task modifications are also an important component to energy conservation.
Adaptive Equipment – In addition to assisting with joint protection and energy conservation, OT may recommend adaptive equipment for fall prevention and community mobility.
Ergonomics – OTs evaluate work, school, and home environments for optimal ergonomic setup and make recommendations for equipment or software that limit repetitive movement and associated joint strain.
Proprioception – Hypermobility can compromise an EDS’s patient’s ability to sense their position, movement and location in space. OTs use targeted exercises to improve proprioception and protect joint health.
Co-occurring Symptoms: EDS patients may also cope with other symptoms like sleep disturbances, mental health challenges, migraines, gastro issues and autoimmune disorders. Occupational therapists can provide interventions, modifications and strategies to manage these co-occurring conditions.
While the Occupational Therapy Toolkit doesn’t currently have a Treatment Guide for EDS, my book is a valuable resource for OTs treating EDS patients with a variety of materials including:
Treatment Guides:
- ADLs
- Rest and Sleep
- Home Safety and Modification
- Fall Prevention and Fall Risk Assessment
- Perceptual Skills and Perceptual Impairments
ADL and Mobility Handouts:
- Adaptive Equipment
- Health Management
Educational Handouts:
- Fatigue Journal
- Tips to Conserve Energy
- Tips to Improve Visual-Motor Integration
- Tips to Improve Visual -Spatial Relations
- Anxiety Journal
- Pain Journal
- Ergonomics
- Handwriting
Therapeutic Exercise Handouts
- Balance
- Elbow, Forearm, Wrist
- Hand
- Lower Body
- Neck
- Shoulder
- Upper Body
For more information about this condition, visit The Ehlers-Danlos Society. The website includes resources for health care professions including continuing education on EDS, research on EDS and a directory of healthcare professionals with expertise in the condition.
Again, I loved hearing from a fellow OT with their suggestion for my book, the Occupational Therapy Toolkit, so if you have an idea, email me directly at Cheryl@ottoolkit.com.
