Occupational Therapy

Hand therapy offers a range of options to increase function, decrease pain, and protect the joints. Occupational therapists often specialize in treating the hands. Certified Hand Therapists (CHTs) are occupational therapists or physical therapists with additional training and specialization in the upper extremity. You can ask your doctor for a referral to a hand therapist or find providers by contacting a licensing board in your country.  

Therapy may include: 

• Education about the principles of joint protection 
• Tools or techniques for adapting a task to make it easier on the hands 
• Pain management interventions 
• Targeted strengthening and stabilizing exercises 
• Proprioceptive training to improve awareness of the joints 
• Ordering, fabricating, or customizing splints 
• Coordination and dexterity tasks 
• Ergonomics and postural alignment for workstation 
• Scar management 

EDS ECHO Summit: Pain Management: Occupational Therapy, Hand Pain and Hand Function by Nathalie Schelpe

An occupational therapist can assess your safety at home and make appropriate recommendations. Everyone’s needs are different, so recommended modifications will depend on your personal challenges and level of physical functioning. 

In the bathroom, some people benefit from grab rails, a raised or framed toilet seat, or a shower chair/tub bench. These modifications can be particularly helpful for people with dysautonomia and/or severe fatigue.  

It can also be helpful to make modifications such as: 

• Removing floor rugs and other trip hazards 
• Organizing clutter and moving furniture to create clear pathways 
• Improving lighting 
• Using stair rails or lifts 
• Environmental changes for sensory needs 

Service dogs are trained to perform tasks to help people with disabilities. There are different types of service dogs that can be helpful to some people with EDS and HSD. Service dogs can be trained to do jobs such as: 

• Retrieving objects 
• Turning lights on and off 
• Opening cabinets or drawers 
• Providing help with balancing 
• Alerting their person and others when help is needed (such as during a blood sugar drop or a fall) 

It is essential for service dogs to always exhibit good behavior, be well-trained to perform needed tasks, and be aware of the environment and any dangers to their person. 

Service dogs are different from emotional support animals, which are often not trained to perform specific tasks. Emotional support animals provide support through companionship and can help ease anxiety, depression, and certain phobias. Emotional support animals are not covered by laws such as the Americans with Disabilities Act, so they are not permitted in the same places as service dogs. Regulations vary by country about service dogs and where they can legally go. 

Some people with EDS and HSD benefit from having a service dog that is trained to perform specific tasks. However, having a service dog comes with the responsibility of caring for the animal, which may be challenging for people with EDS and HSD. If you think having a service dog could help you, you can talk to your care team about whether this is the right choice for you. An occupational therapist can help identify tasks a service dog could help with. 

The Benefits of Service Dogs to Individuals Living With EDS and HSD – Ellen Lenox Smith

The Ehlers-Danlos Society has a Healthcare Professionals Directory with occupational therapists in some areas. You can get recommendations by connecting with other people who have EDS and HSD in your area through support groups and online communities. In some countries, occupational therapy associations have online databases of therapists that you can search to find someone near you.  

All occupational therapists should be able to work with a client with EDS or HSD on mobility, environmental modification, and assistive technology. All occupational therapists have the same core training and skills to assess a person, their activities, and their environment. Occupational therapists with pain management experience can assist with pacing, energy conservation, and joint protection education. Often, your knowledge of your condition combined with their knowledge of occupational therapy concepts can provide the support you need.  

Occupational therapists can take continuing education courses in connective tissue disorders and joint hypermobility. EDS ECHO is an educational program for healthcare professionals to learn to better care for those living with EDS and HSD. There are multiple courses that are suitable for occupational therapists looking to learn more about EDS and HSD. Be sure to tell your providers about EDS ECHO.