Why Don't Doctors Believe in Ehlers-Danlos Syndrome (EDS)?

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Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders that are often misunderstood or dismissed by many healthcare professionals. Patients frequently report that doctors either overlook their condition or fail to take their symptoms seriously, leading to significant delays in receiving a diagnosis and appropriate care. This problem is widespread and contributes to patients’ frustration and worsening health outcomes.

7 Reasons why Doctors Don't Always Believe or Understand EDS:

1. Lack of Awareness and Education

EDS is not well understood by many doctors because it's relatively rare and often goes undiagnosed. For instance, hypermobile EDS, while more common than previously thought, is still widely underrecognized. Medical schools often do not provide enough training on connective tissue disorders, leaving doctors unprepared to recognize the diverse and sometimes subtle symptoms of EDS. The multisystem nature of the condition also means that its symptoms can easily be mistaken for other, more familiar conditions, such as fibromyalgia, chronic fatigue syndrome, or even psychological disorders.

2. Misdiagnosis and Diagnostic Delays

It can take years for EDS patients to be correctly diagnosed—often over a decade. This delay occurs because the symptoms of EDS overlap with other more common conditions, like generalized joint hypermobility or autoimmune disorders. Misdiagnosis often leads to inadequate treatment, as doctors may focus on managing only one aspect of the disorder, such as joint pain, rather than addressing the full scope of EDS’s systemic effects.

3. No Simple Diagnostic Test

Unlike some other forms of EDS, hypermobile EDS (hEDS) lacks a clear genetic marker that can be identified with a simple test. This means that the diagnosis of hEDS relies on a set of clinical criteria, which are often complex and unfamiliar to many healthcare providers. Without a straightforward diagnostic process, doctors may hesitate to make a definitive diagnosis, contributing to a sense of disbelief in the patient’s condition.

4. Complex and Multisystemic Nature of EDS

EDS does not neatly fit within the scope of any one medical specialty. It can affect joints, skin, blood vessels, the gastrointestinal system, and mental health. This complexity often leads to fragmented care, with different specialists managing separate symptoms, but without an overarching understanding of the disorder. As a result, the full impact of EDS on a patient’s quality of life can be missed, leaving patients with incomplete or ineffective treatment.

5. Psychological Misinterpretations

EDS, particularly hEDS, is often accompanied by mental health conditions such as anxiety or depression. Unfortunately, these psychological symptoms are sometimes viewed as the primary issue, causing doctors to dismiss or minimize the physical complaints associated with EDS. This can lead to patients being labeled as hypochondriacs or being told their symptoms are “all in their head,” further delaying proper treatment.

6. History of Underestimation

For many years, EDS was regarded as a condition primarily involving joint hypermobility and skin elasticity, with little recognition of its broader, more debilitating impact on patients' lives. As a result, many healthcare professionals still consider it a minor condition, underestimating its potential severity. This historical underappreciation of EDS continues to contribute to disbelief and skepticism when patients present with its more serious, systemic symptoms.

7. Insurance and Healthcare System Challenges

In the U.S., the healthcare system itself adds another layer of complexity. Many doctors are unfamiliar with the new classification of EDS, including Hypermobility Spectrum Disorder (HSD), which was introduced in 2017. Without clear diagnostic codes for conditions like HSD, insurance companies often do not cover treatments, leaving patients with little recourse for care. Furthermore, a lack of coordinated national health policy means that no one specialty is assigned responsibility for diagnosing and treating EDS, leaving patients without a clear path to care.

Conclusion: Improving EDS Diagnosis and Care

For doctors to better understand and believe in EDS, especially hypermobile EDS, there needs to be a concerted effort to increase education about the condition in medical schools and beyond. A more interdisciplinary approach to care could significantly improve patient outcomes by addressing the full scope of EDS's systemic impact. Additionally, as research continues, there is hope that more definitive diagnostic tools will be developed, helping doctors and patients alike navigate this challenging condition with more confidence.

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