Hypermobility and Ehlers-Danlos Syndrome (EDS) in Today's Practices

For years, individuals with hyper-mobility and Ehlers-Danlos Syndrome (EDS) have navigated a healthcare system that often failed to recognize or appropriately address their unique needs. Misdiagnoses were common, and treatments that worsened their conditions were frequently prescribed, leaving patients in a cycle of pain and frustration. However, a shift is occurring as awareness about these conditions grows, particularly in certain populations such as those who are neurodivergent, autistic, 2SLGBTQIA+, or living with ADHD.

This article explores the evolving understanding of hyper-mobility and EDS, highlighting the challenges faced by those affected and the growing recognition of these conditions in specific populations. Additionally, we will delve into the importance of specialized training and exercise therapy designed to address the unique needs of individuals with hyper-mobility and EDS, offering a pathway to improved quality of life.

Section 1: Understanding Hyper-mobility and EDS

What is Hyper-mobility and EDS?

Hyper-mobility refers to an increased range of motion in the joints, which can occur in isolation or as part of a broader syndrome like Ehlers-Danlos Syndrome (EDS). EDS is a group of connective tissue disorders characterized by joint hypermobility, skin that can be unusually elastic, and tissue fragility. Among the various types of EDS, Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common, yet also the most elusive in terms of diagnosis due to its less visible symptoms compared to other EDS types.

Individuals with hyper-mobility, particularly those with hEDS, often experience chronic pain, frequent joint dislocations, and a variety of other symptoms that significantly impact their daily lives. Despite this, many have gone undiagnosed or misdiagnosed for years, receiving treatment that does little to alleviate—and sometimes exacerbates—their symptoms.

Misdiagnosis and Lack of Recognition

Historically, hypermobility and EDS were largely misunderstood by the medical community. Doctors often dismissed symptoms as benign or attributed them to other conditions, leading to a staggering number of misdiagnoses. Patients frequently encountered healthcare providers who failed to connect their joint issues to a systemic condition like EDS, resulting in a fragmented understanding of their health.

Moreover, traditional medical advice often included recommendations that were not only ineffective but potentially harmful. For instance, standard physical therapy regimens that emphasize stretching can worsen the instability in hyper-mobile joints, while chiropractic adjustments may exacerbate tissue damage. This lack of understanding and tailored care has left many patients in a perpetual state of pain and injury.

The Inadequacy of Traditional Therapies

In many cases, traditional therapies fall short in effectively treating hyper-mobility and EDS due to the one-size-fits-all approach often mandated by healthcare insurance restrictions. Insurance companies typically dictate the types of treatments that are covered, focusing on standardized, short-term interventions rather than the individualized, long-term care that many hyper-mobile and EDS patients need.

Physical therapists, for example, are often limited in the types of exercises they can prescribe due to insurance policies that favor generic strengthening and stretching programs. These programs may benefit the general population, but they can be detrimental to someone with hyper-mobility or EDS, where excessive stretching can lead to increased joint instability and pain. Additionally, insurance constraints often limit the number of sessions a patient can attend, forcing therapists to focus on short-term goals rather than the comprehensive, slow-progressing care that is crucial for these patients.

Chiropractic care, while sometimes covered, is another area where patients may receive treatment that does more harm than good. Adjustments intended to relieve tension or pain in the general population can cause significant harm in hyper-mobile individuals, whose joints are already excessively loose and vulnerable to injury.

These limitations imposed by insurance not only hinder effective treatment but also contribute to the ongoing cycle of mismanagement. Patients are often left without access to the specialized, long-term care that would enable them to manage their conditions effectively, leading to worsening symptoms and a decrease in overall quality of life.

The Role of an Informed Personal Trainer

This is where the role of an informed personal trainer becomes crucial. Unlike traditional healthcare providers who may be constrained by insurance guidelines, a knowledgeable personal trainer can tailor exercise programs specifically to the needs of those with hypermobility and EDS. By focusing on building strength, stability, and functional movement patterns, a well-trained personal trainer can help clients manage their symptoms more effectively and even reduce their pain.

Such trainers understand the importance of avoiding the generic approaches that often exacerbate the condition and instead employ techniques that prioritize joint protection, muscle balance, and gradual progression. In the next section, we will explore how these specialized training methods are making a significant difference for individuals with hypermobility and EDS, particularly within neurodivergent and other specific communities.

Section 2: Rising Recognition in Specific Populations

Growing Diagnostic Numbers

In recent years, there has been a noticeable increase in the diagnosis of hyper-mobility and Ehlers-Danlos Syndrome (EDS), particularly within certain populations. This rise can be attributed to greater awareness among healthcare providers and a growing understanding of the complex interplay between these conditions and other neurodevelopmental and psychological traits.

Research on Specific Populations

Studies have shown that individuals who are autistic, neurodivergent, 2SLGBTQIA+, or have ADHD are significantly more likely to be diagnosed with hyper-mobility and EDS. Research suggests that neurodivergent individuals, including those with autism or ADHD, often experience heightened sensory sensitivities, which may be linked to the connective tissue abnormalities seen in EDS. Additionally, individuals within the 2SLGBTQIA+ community, particularly those who are transgender or gender non-conforming, may have faced barriers to healthcare that delayed or complicated their diagnoses, contributing to a higher prevalence of EDS in these groups.

Factors Contributing to Increased Diagnosis

The rise in diagnostic numbers can be credited to several key factors. First, there has been a significant push within patient communities to raise awareness about these conditions, particularly through social media and advocacy groups. Patients sharing their stories have highlighted the need for a more nuanced understanding of hyper-mobility and EDS, leading to increased public and professional awareness.

Second, medical research has begun to explore the links between hyper-mobility, EDS, and neurodivergence more thoroughly. As a result, clinicians are becoming better equipped to recognize the signs of these conditions, especially in populations where they might not have been considered before.

Finally, there is a growing recognition of the intersectionality of health—that is, how various aspects of a person’s identity and experience, such as neurodivergence or being part of the 2SLGBTQIA+ community, can impact their health and the way they are treated within the healthcare system. This broader understanding has led to more comprehensive screening and diagnosis, particularly in previously under-diagnosed communities.

Section 3: New Approaches in Personal Training and Exercise Therapy

Introduction to Specialized Training

As recognition of hyper-mobility and EDS has grown, so too has the understanding that traditional fitness and therapy approaches often fail to meet the needs of those with these conditions. This has led to the development of specialized training methods designed specifically for hyper-mobile bodies. These methods focus on building strength and stability, rather than merely increasing flexibility, which can be detrimental for those with joint hypermobility.

An informed personal trainer, like myself, plays a pivotal role in this process. By understanding the unique challenges faced by hyper-mobile individuals, particularly within neurodivergent and other specific populations, I can design exercise programs that address their specific needs, helping them not only manage their symptoms but also improve their overall quality of life.

My Work and Innovations

In my practice, I’ve developed a set of strategies that have proven highly effective for individuals with hypermobility and EDS. These include:

• Strength Training for Hyper-mobility: Focused on developing muscle support around the joints to enhance stability and reduce the risk of dislocations and injuries. Unlike traditional strength training, which often emphasizes high-intensity workouts, the approach for hypermobile clients is more gradual, with an emphasis on proper form and controlled movements.

• Stability Exercises: These are essential for improving balance and proprioception (the sense of the relative position of one’s own body parts), which are often compromised in individuals with hypermobility. Stability training helps clients feel more secure in their movements and reduces the likelihood of injury during everyday activities.

• Pain Management Techniques: Given that many hyper-mobile individuals experience chronic pain, integrating pain management strategies into the training routine is crucial. This might involve gentle, low-impact exercises that promote circulation and reduce muscle tension, as well as educating clients on how to recognize and respond to their body’s signals.

• Individualized Programs for EDS: No two hyper-mobile individuals are the same, and as such, their training programs must be highly personalized. I work closely with each client to understand their specific challenges, goals, and pain points, adjusting the program as needed to ensure it remains effective and safe.

Success Stories

Over the years, I’ve seen firsthand how these specialized approaches can transform lives. For example, one client, who struggled with chronic joint pain and frequent dislocations, was able to significantly reduce their symptoms through a tailored strength and stability program. Another client, who had been told by multiple healthcare providers that they would have to live with their pain, found relief and regained confidence in their body’s abilities after just a few months of specialized training.

The Future of Training and Therapy for EDS and Hyper-mobility

As the medical community continues to learn more about hypermobility and EDS, the role of specialized training methods and informed personal trainers will become increasingly important. These professionals can provide the individualized, long-term

care that is often lacking in traditional healthcare settings, helping clients achieve lasting improvements in their health and well-being.

The future of care for individuals with hyper-mobility and EDS lies in this personalized, informed approach. As awareness continues to grow, and as more professionals in the fields of fitness and therapy become educated on the specific needs of these populations, we can hope to see a significant improvement in the outcomes for those living with these conditions.

Moreover, the success stories emerging from personalized training programs highlight the potential for transformation in the lives of hyper-mobile individuals. Through a commitment to understanding and addressing the unique needs of each client, personal trainers are not just helping people manage their symptoms—they’re helping them reclaim their lives.

As we move forward, it is vital for the broader healthcare and fitness communities to recognize the importance of this specialized approach. By continuing to educate ourselves and others, advocating for individualized care, and challenging the one-size-fits-all mentality that has dominated for so long, we can contribute to a future where those with hyper-mobility and EDS receive the care, support, and respect they deserve.

Citations

1. Neurodivergence and EDS: Research shows a strong correlation between neurodivergent conditions (such as autism and ADHD) and the prevalence of EDS. Studies suggest that the sensory processing differences and connective tissue issues commonly observed in these populations may share underlying biological mechanisms (e.g., Cederlöf et al., 2016, Journal of Neurodevelopmental Disorders).

2. 2SLGBTQIA+ Community and EDS: Studies have identified healthcare disparities faced by the 2SLGBTQIA+ community, particularly transgender individuals, that contribute to delayed or complicated diagnoses of chronic conditions such as EDS. Research emphasizes the need for more inclusive healthcare practices (e.g., Reisner et al., 2015, The Lancet).

About the author:

Jay Rotteveel is a Personal Trainer and a Human Movement Specialist. Owner and Founder of J Fitness and Training, Hockey Player, and a 2SLGBTQIA+ community advocate.

• personal training

• fitness

• movement patterns

• corrective exercise

• pain-free

• pain

• assessment

• injury prevention

• exercise therapy

• hyper-mobile