Busting Myths: The Truth About Hypermobility and Ehlers-Danlos Syndrome (EDS)

Hypermobility and Ehlers-Danlos Syndrome (EDS) are often misunderstood, leading to misconceptions that can impact how these conditions are perceived and managed. From thinking that all hypermobile joints come with no strings attached to assuming EDS is just about flexible limbs, it’s time to clear the air. Let’s dive into the myths and set the record straight on what it really means to live with hypermobility and EDS.

1. Myth: All people with hypermobility have Ehlers-Danlos Syndrome (EDS).

• Fact: While hypermobility is a feature of EDS, not everyone with hypermobility has EDS. EDS is a group of connective tissue disorders that affect the skin, joints, and blood vessels, and it often includes hypermobility as one of its symptoms. However, hypermobility can also occur independently without the other symptoms of EDS. EDS has many other signs, such as fragile skin, easy bruising, and internal bleeding, which are not typically seen in hypermobile individuals without the syndrome.

  
  

2. Myth: EDS is rare, and you wouldn’t have it without a clear family history.

• Fact: Ehlers-Danlos Syndrome is not as rare as it’s often believed to be, and it can be present even without a clear family history. Some forms of EDS (e.g., hypermobile EDS) may not have a strong family history, and mutations can occur spontaneously. A person can have the syndrome without knowing it, especially if the symptoms are mild or misunderstood by healthcare providers.

  
  

3. Myth: EDS only affects the joints and causes hypermobility.

• Fact: While hypermobility is a key feature of many types of EDS, the syndrome also affects other tissues throughout the body, including the skin, blood vessels, and internal organs. Individuals with EDS may experience easily bruised skin, scarring issues, frequent dislocations, joint instability, and internal bleeding due to weakened connective tissues. The impact on connective tissues can lead to more complex systemic issues beyond the joints.

  
  

4. Myth: People with EDS don’t experience pain.

• Fact: Many people with EDS, particularly those with hypermobile EDS (hEDS), experience chronic pain. The pain may be due to joint instability, frequent dislocations, muscle fatigue, or damage to ligaments and tendons. The severity of the pain can vary, but it’s common for individuals with EDS to face significant discomfort and have a lower quality of life due to their condition.

  
  

5. Myth: Hypermobility is harmless and doesn’t need treatment.

• Fact: While some individuals with hypermobility may not experience symptoms, others can face joint instability, muscle fatigue, and pain. Hypermobility can increase the risk of joint dislocations, injuries, and arthritis. Treatment, such as physical therapy, joint stabilization exercises, and muscle strengthening, is important for managing symptoms and preventing further joint damage.

  
  

6. Myth: EDS only causes joint dislocations.

• Fact: Joint dislocations are a hallmark symptom of EDS, but they are just one aspect of the syndrome. EDS can cause a variety of symptoms such as skin that is fragile or hyper-elastic, blood vessel fragility (leading to easy bruising or internal bleeding), dental issues, scoliosis, and gastrointestinal problems. The disorder can also affect other systems, including the cardiovascular, musculoskeletal, and ocular systems.

  
  

7. Myth: If you have hypermobility, it means you have EDS.

• Fact: Not everyone with hypermobility has EDS. Hypermobile joints alone do not indicate the presence of EDS. Many people with hypermobility do not experience other symptoms related to connective tissue disorders. The diagnosis of EDS depends on a thorough evaluation by a healthcare professional who will look at the overall clinical picture, including family history, skin elasticity, and joint instability.

  
  

8. Myth: EDS is a minor condition and doesn’t require serious attention.

• Fact: EDS can have serious, long-term consequences if left unmanaged. People with EDS may experience joint damage, frequent injuries, or cardiovascular complications over time. The condition can cause significant mobility challenges, chronic pain, and may require lifelong care, including physical therapy, pain management, and sometimes surgeries.

  
  

9. Myth: EDS is always easy to diagnose.

• Fact: Diagnosing EDS can be difficult, especially in cases where symptoms are mild or mistaken for other conditions. Some types of EDS, particularly hypermobile EDS, do not have clear, outward signs like skin hyper-elasticity or easy bruising, making it harder to diagnose. Genetic testing can confirm a diagnosis, but not all forms of EDS have known genetic markers, making clinical diagnosis based on symptoms and family history crucial.

  
  

10. Myth: You can outgrow hypermobility or EDS.

• Fact: Neither hypermobility nor EDS can be outgrown. Hypermobility may persist into adulthood, and while some individuals may experience fewer joint issues as they age, the underlying condition often remains. EDS is a genetic condition that persists throughout life, and its symptoms can vary in severity depending on the individual and the type of EDS they have.

  
  

By understanding these myths and the true nature of hypermobility and EDS, individuals can make more informed decisions regarding their health and management of these conditions.

Call Engage Therapy and Wellness at 315-810-2423 to learn more about how our therapy team can help!