Ehlers-Danlos Syndrome (EDS): Understanding, Awareness, and Management
What Is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome (EDS) refers to a group of inherited connective tissue disorders. Connective tissues provide support and structure to skin, joints, blood vessels, and many organs throughout the body. EDS is primarily characterized by joint hypermobility (joints that move beyond the normal range), skin that is often soft and stretchy, and tissue fragility due to faulty collagen that can lead to easy bruising and slow wound healing.
Other Manifestations of EDS
Cardiovascular comorbidities: mitral valve prolapse, aortic root dilatation, Raynaud’s, Low Blood Pressure, Varicose Veins, &Hemorrhoids
Neurologic: Chiari malformation, cerebrospinal fluid leak, craniocervical instability, spondylolisthesis, scoliosis, neurodivergence, headaches and migraines, tethered cord syndrome, Fibromyalgia
Autonomic Dysfunction: POTS, vasovagal syncope
Gastrointestinal manifestations: Gastroparesis/Constipation, irritable bowel syndrome, Acid Reflux
Respiratory: Sleep apnea
Mental Health: Anxiety, Mood disorders, Poor sleep quality/Racing thoughts
Genitourinary System: Uterine Prolapse, rectocele, Interstitial cystitis, endometriosis, incontinence
Types of EDS
- Hypermobile EDS (hEDS): Characterized mainly by joint hypermobility, frequent joint dislocations, and chronic pain. The genetic cause of hEDS has not yet been discovered.
- Classical EDS (cEDS): Involves highly elastic, velvety skin and joint hypermobility. Individuals may also have atrophic scarring and fragile skin.
- Vascular EDS (vEDS): The most serious form, as it affects blood vessel walls and internal organs, making them prone to rupture. It is caused by mutations in the COL3A1 gene.
HSD vs. EDS
The essential difference between HSD and hEDS lies in the stricter criteria for hEDS compared to HSD. Otherwise many symptoms and treatments are the same.
Why Early Detection Matters
Early diagnosis of EDS is crucial for several reasons. Identifying the syndrome early allows for tailored management strategies that can reduce complications, improve quality of life, and prevent future injuries. Early detection is especially important for types such as vascular EDS, where life-threatening complications can occur without warning. Furthermore, it helps families understand the genetic implications and seek counseling if needed.
Growing Awareness and Local Treatment Options
Awareness of EDS has been increasing worldwide, including at the local level. More health professionals are becoming familiar with the signs and symptoms, leading to improved recognition and referrals for genetic testing and specialist care. Support groups and advocacy organizations are helping to educate the public and healthcare providers, making resources more accessible.
Local treatment options for EDS typically involve a multidisciplinary approach, including EDS centric geneticists, rheumatologists, cardiologists, and physical therapists. While there is no cure for EDS, management focuses on education, ergonomics/postural alignment, symptom relief, injury prevention, and maintaining function with safe strengthening.
One. is at the forefront of EDS management with the implementation of the Finding Functional Foundations techniques for improved neuromotor control , Pilates instructors that are knowledgeable in the condition to provide safe strengthening and for Deep Tissue Laser to help to reduce pain from acute flare ups.
The Role of Physical Therapy in EDS Management
Physical therapy is a cornerstone of EDS management. Physical therapists develop personalized safe exercise programs that focus on improving joint stability, muscle strength, and proprioception (awareness of joint position). This helps reduce the frequency of joint dislocations, manage chronic pain, and maximize pain free mobility.
A physical therapist can also educate individuals with EDS on safe movement patterns and injury prevention strategies. By working closely with patients, therapists help them maintain independence and improve quality of life. In many communities, physical therapists with expertise in hypermobility disorders are becoming more available, reflecting the growing recognition of EDS and its management needs.
Ehlers-Danlos Syndrome is a complex group of connective tissue disorders with varying presentations and risks. Early detection is vital for effective management and prevention of longterm injuries and complications. With growing awareness of the condition, we can help as many people as possible to live healthier lives while limiting pain and maintaining function into later years.
Not all PTs are created equal
Jennifer Balducci is a local wellness based PT at One. who happens to also have a hEDS diagnosis. With background in the EDS Society’s Finding Functional Foundations training to improve neuromotor control and close to 30 years of working with the hypermobile population, she is uniquely qualified to identify those with the condition, helping them to problem solve to find the best resources, and empowering them to take better control of their health. Get in touch with her today if you'd like more information about her services!
