The collaborative nature of the occupational therapy profession often relies on the shared experiences of clinicians working on the front lines of patient care. Recently, that spirit of collaboration prompted a significant addition to the professional resources available to therapists. After receiving a thoughtful inquiry from an occupational therapist practicing in Tennessee, the creator of the Occupational Therapy Toolkit has announced plans to expand the publication’s scope to include a dedicated treatment guide for Ehlers-Danlos Syndrome (EDS).
The request originated from a patient-centered perspective: a clinician reached out to express that their patient, who lives with the complexities of EDS, had questioned why a formal treatment guide for their condition was missing from the widely used Occupational Therapy Toolkit. Recognizing the validity of this concern, the author acknowledged that while EDS is considered a rare condition—one they had not personally encountered during their own years of clinical practice—the potential for occupational therapy to profoundly impact the lives of those with the syndrome is substantial. By providing targeted interventions that address symptom management, functional independence, and overall quality of life, therapists can play a pivotal role in the long-term health of these patients. Consequently, the decision was made to incorporate a comprehensive EDS treatment guide into the next edition of the toolkit.
Because the 8th edition of the Occupational Therapy Toolkit was only recently released in 2024, the immediate focus has shifted toward providing clinicians with a deeper understanding of the condition and the various ways occupational therapy can serve as a vital component of a multidisciplinary care team.
Ehlers-Danlos Syndrome is a complex, multisystemic connective tissue disorder that fundamentally alters how the human body produces and utilizes collagen, which acts as the primary structural protein in the body. Because collagen is essential for the integrity of skin, joints, blood vessels, and other tissues, its dysfunction leads to a wide array of clinical manifestations. Medical researchers have currently identified 13 distinct types of EDS, each characterized by its own genetic origin and unique symptom profile. Despite this variation, patients often present with a common set of challenges that occupational therapists are uniquely equipped to address. Among the most frequent clinical observations are joint hypermobility—where joints move beyond their normal range of motion—along with significant joint instability and chronic pain. Furthermore, patients often experience fragile skin that is prone to tearing, bruising, and poor wound healing. Beyond the musculoskeletal and integumentary systems, EDS frequently presents with systemic issues, including chronic fatigue, dizziness upon standing, and complex digestive disturbances that can significantly impair a patient’s ability to engage in meaningful daily activities.
For the occupational therapist, the approach to EDS requires a holistic perspective, balancing the immediate need for pain relief with the long-term goal of maintaining functional independence. One of the primary pillars of this care is joint protection. Because EDS patients are susceptible to painful hyperextension and chronic inflammation, therapists focus on modifying daily tasks to reduce unnecessary stress on joints. This includes teaching patients safe, evidence-based home treatments for pain management and, when necessary, designing and fitting custom splints to stabilize vulnerable joints during high-demand activities. By providing the structural support necessary to prevent injury, therapists help patients navigate their environments with greater confidence and less discomfort.
Energy conservation is another cornerstone of therapeutic intervention for this population. Many patients living with EDS contend with persistent, debilitating fatigue that can fluctuate throughout the day. Occupational therapists collaborate with these individuals to develop pacing and planning strategies that help manage their limited energy reserves. By analyzing the patient’s daily routine and implementing task modifications—such as simplifying the sequence of an activity or utilizing alternative methods to complete chores—therapists can help patients avoid the "boom-and-bust" cycle of activity that often exacerbates their symptoms.
The clinical utility of adaptive equipment also extends into the realm of safety and mobility. Beyond simply supporting joints or conserving energy, therapists may recommend specific adaptive devices to assist with fall prevention, particularly for patients who struggle with balance or proprioceptive deficits. Improving community mobility is a high priority, as it allows patients to remain active and connected to their social and professional lives without overexerting their physical systems.
Ergonomic assessment represents another critical area of intervention. Whether a patient is navigating a professional office, a school environment, or their own home, an occupational therapist can conduct a thorough evaluation of their workspace. By adjusting desk heights, monitor positions, and seating, or by recommending specialized software and equipment that minimize the need for repetitive, strenuous movements, therapists can significantly lower the risk of joint strain. These ergonomic adjustments are essential for long-term health, as they minimize the micro-traumas that can accumulate over time in the joints of an EDS patient.
Perhaps one of the more nuanced challenges in treating EDS involves proprioception. Because of the inherent hypermobility of their joints, many patients find their ability to accurately sense their body’s position, movement, and location in space—their proprioceptive sense—to be compromised. This can lead to clumsiness, increased risk of injury, and a decreased sense of physical security. Occupational therapists address this through targeted, therapeutic exercises designed to improve proprioceptive feedback, which in turn helps protect joint health and improves overall movement coordination.
It is also important to recognize the breadth of co-occurring symptoms that accompany EDS. Many patients deal with a constellation of secondary issues, including sleep disturbances, migraines, mental health challenges related to chronic illness, and various autoimmune or gastrointestinal disorders. The role of the occupational therapist in this context is to provide a supportive framework for managing these complexities. By offering interventions, modifications, and coping strategies, therapists help patients maintain a sense of agency over their health, even when facing multiple, overlapping medical challenges.
While the Occupational Therapy Toolkit is currently expanding its specific offerings for EDS, the existing resources within the publication remain highly applicable to the diverse needs of this patient population. The toolkit continues to provide extensive material in the areas of general treatment guides, activities of daily living (ADL) support, mobility handouts, and patient education resources, all of which can be adapted to meet the specific requirements of those living with connective tissue disorders.
For clinicians seeking to deepen their understanding of this condition, the author recommends the resources provided by The Ehlers-Danlos Society. Their official website serves as a central hub for healthcare professionals, offering access to continuing education modules, the latest clinical research on the various types of EDS, and a directory of healthcare providers who specialize in the management of this syndrome.
The initiative to include EDS in future updates of the Occupational Therapy Toolkit serves as a reminder of the power of practitioner input. The author emphasized that the profession thrives when therapists share their clinical observations and suggest ways to bridge gaps in existing literature. By opening a direct line of communication for such feedback, the goal remains to ensure that clinical resources evolve in tandem with the real-world needs of patients and the clinicians who serve them. As the field of occupational therapy continues to expand its reach, the inclusion of specialized guides for conditions like EDS ensures that practitioners are better equipped to provide high-quality, evidence-based care for every patient they encounter.
