Understanding the different types of Ehlers-Danlos Syndrome (EDS) is essential for recognizing how this group of connective tissue disorders affects individuals in unique ways. EDS is a group of connective tissue disorders that affect the way the body produces collagen, leading to joint instability, skin fragility, and a host of other systemic symptoms. While there are thirteen different subtypes of EDS, the most commonly seen in our physical therapy clinic is Hypermobile EDS (hEDS) and Classical EDS (cEDS). These conditions present unique challenges, and no two cases are exactly alike. Because EDS affects connective tissue throughout the body, it often leads to a disconnect between the brain and body, increasing the risk of injury and tissue dysfunction. Understanding these subtypes can help individuals seek the right care and improve their quality of life.
Hypermobile EDS and Classical EDS
Hypermobile EDS (hEDS) is the most common form of EDS and is characterized by generalized joint hypermobility, frequent dislocations or subluxations, chronic pain, and autonomic dysfunction. Many individuals with hEDS experience secondary conditions that can complicate treatment and daily life, such as:
- Postural Orthostatic Tachycardia Syndrome (POTS) – Causes dizziness, heart palpitations, and difficulty regulating blood pressure.
- Mast Cell Activation Syndrome (MCAS) – Leads to allergic-like reactions, flushing, and systemic inflammation.
- Chiari Malformation – Structural issues at the base of the skull that can cause headaches, dizziness, and neurological symptoms.
- Craniocervical Instability (CCI) – Excessive movement at the junction of the skull and cervical spine, leading to pain, brain fog, and instability.
- Gastrointestinal Dysmotility – Common in EDS patients, causing reflux, bloating, and slow digestion.
- Temporomandibular Joint Disorder (TMJ/TMD) – Jaw dysfunction that results in pain and difficulty chewing.
- Pelvic Floor Dysfunction – Can lead to bladder and bowel issues, along with chronic pelvic pain.
These secondary diagnoses can help guide treatment, as addressing underlying issues like autonomic instability or mast cell reactions can significantly improve outcomes. Classical EDS (cEDS) shares many characteristics with hEDS but is distinguished by more significant skin involvement, including extreme skin elasticity, poor wound healing, and a tendency for severe scarring. Both types require a comprehensive treatment plan that addresses not only joint instability but also systemic issues affecting daily function.
Presentation Variability and Early Signs in Children
EDS can present differently in every individual, even within the same family. Some may struggle primarily with joint instability, while others experience extreme fatigue, gastrointestinal issues, or neurological complications. Recognizing EDS in children is crucial for early intervention. Early signs include frequent joint dislocations, unexplained bruising, delayed motor milestones, and chronic pain that seems disproportionate to injuries. Children with EDS may also exhibit coordination difficulties or have trouble keeping up with peers in physical activities. Parents and caregivers should be proactive in seeking a diagnosis if they notice these signs, as early physical therapy intervention can help prevent long-term complications.
The Importance of Secondary Diagnoses in Structuring Treatment
While an official EDS diagnosis is not necessary for treatment, understanding secondary conditions can help structure therapy more effectively. For example, a patient with EDS and POTS may need a program focused on autonomic regulation and cardiovascular conditioning, while someone with CCI may require specific cervical stabilization exercises. Physical therapists who are experienced in treating hypermobile patients understand the interconnected nature of these conditions and tailor programs to address not just musculoskeletal symptoms but also nervous system involvement and tissue dysfunction.
Why Seeing a Hypermobile-Aware Physical Therapist Matters
EDS treatment requires a whole-body approach. Unlike standard orthopedic rehabilitation, which often focuses solely on isolated injuries, EDS therapy must account for systemic laxity, proprioception deficits, and the body’s tendency toward compensatory movement patterns. Working with a physical therapist who is familiar with hypermobility ensures that treatment is safe, effective, and considers the patient’s unique needs. Many individuals with EDS have been misdiagnosed or mistreated with exercises that do not account for joint instability, leading to worsening symptoms. A specialized PT can provide the right balance of strength training, neuromuscular re-education, and pain management strategies to improve function and reduce injury risk.
Seeking Care and Moving Forward
If you suspect you or your child has EDS, seeking a diagnosis can help guide your treatment plan, but it is not required for starting therapy. Identifying secondary conditions like POTS, MCAS, or Chiari malformation can further refine your care and improve your outcomes. A physical therapist trained in hypermobility can help you navigate these complexities, providing tailored interventions to strengthen your body, improve stability, and reduce pain. At our clinic, we specialize in EDS treatment, helping patients take control of their health and live fuller, more active lives. If you or a loved one is struggling with EDS symptoms, don’t hesitate to reach out—early intervention and expert care can make all the difference.