Understanding EDS & HSD



The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

Connective tissue serves as the framework within the body, uniting, supporting, and breaking apart various tissues and organs. Distributed throughout the body, it provides both strength and flexibility to the body as well as helps perform general functions as well as specialized ones. Connective tissue disorders disrupt the most fundamental processes and frameworks, leading to a spectrum of issues that can vary widely in severity and impact seemingly disparate areas of the body.

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Joint hypermobility and/or instability may be a person’s only problem. It can also occur as part of a known syndrome, such as types of Ehlers-Danlos syndromes (EDS), Marfan syndrome, or Down syndrome. The hypermobility spectrum disorders occur when a person has symptomatic joint hypermobility that cannot be explained by other conditions.

Ehlers-Danlos Syndrome (EDS) needs greater awareness due to the frequent misdiagnosis and misunderstanding surrounding this condition. Often, individuals with EDS ensure a prolonged journey to accurate diagnosis, encountering healthcare professionals unfamiliar with the subtleness of the disorder. This delay in recognition can result in inadequate management of symptoms and unnecessary suffering. Early diagnosis is crucial for positive patient outcomes. Addressing symptoms as they emerge allows for effective management. Primarily preventive in nature, care strategies aim to support individuals with EDS and minimize potential harm. Tailored interventions to the specific symptoms exhibited by each person with EDS are imperative. EDS can impact individuals of all ages, races, and genders.

“Every Zebra has a different set of stripes; therefore, no two EDS/HSD patients will present the same.”

Symptoms of EDS: 

Each type of EDS is associated with different symptoms and characteristics. Some symptoms are common across all types of EDS, such as joint hypermobility, pain, and fatigue. Other symptoms are only observed in specific types of EDS. Even within the same type of EDS, people can experience very different symptoms from each other. There are also many other medical conditions that are often seen in people with EDS. These primarily include types of dysautonomia and mast cell diseases.

Symptoms of HSD:

Two different people with HSD may experience very different symptoms. For example, one person with HSD may have severe joint instability, fatigue, and autonomic dysfunction.  Another person with HSD may have mild joint instability but severe headaches and gastrointestinal issues. Both people experience HSD differently, but neither person has “more HSD” than the other.

Common signs/symptoms amongst the EDS/HSD population: (There can be overlap, but not all are necessarily present)

  • Joint subluxations and/or dislocations
  • Joint pain and loss of joint function
  • Joint damage, such as cartilage tear
  • Early joint degeneration (which may, over time, lead to significant wear and tear called osteoarthritis)
  • Soft tissue (ligament/tendon) damage and injury
  • Recurrent, persistent, and/or chronic pain
  • Poor proprioception (reduced awareness of the body’s position/movement)
  • Fatigue
  • Autonomic dysfunction (POTS, OI, OH, Raynaud’s, CRPS)
  • Mast Cell Diseases
  • Headaches
  • Gastrointestinal problems
  • Anxiety disorders
  • Neurodivergence (Autism, ADHD)

Physical therapists offer valuable assistance to individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), tailoring their approach to the specific pain and symptoms experienced.

A physical therapist has the ability to:

  • Recommend suitable exercises aimed at alleviating pain linked with joint instability, muscle spasms, strains, and sprains.
  • Offer guidance and educational tips for enhancing posture.
  • Provide advice on executing daily tasks in a manner that minimizes discomfort.
  • Administer gentle manual therapy to alleviate pain and address joint instability.
  • Share practical tips for managing joint instability from the comfort of one’s home.

A physical therapist may also recommend additional effective plan management techniques, including:

  • Heat
  • Ice
  • Electrotherapy (such as TENS)
  • Supportive taping
  • Braces and splints
  • Mobility aids
  • Laser therapy
  • Ultrasound
  • Dry Needling

Discover more about EDS/HSD at The Ehlers-Danlos Society here.