Can you live with EDS and not know it?

Why EDS Often Goes Undiagnosed:

• Lack of awareness among medical professionals – Many healthcare providers have limited knowledge of EDS, leading to missed or incorrect diagnoses.
• Wide range of symptom severity and presentation – EDS does not look the same in every individual, making it harder to recognize.
• Similarities to other conditions – Symptoms of EDS often overlap with other conditions, such as AMPS, POTS, fibromyalgia, and other chronic pain conditions, causing further confusion.
• Highly individualized manifestation – No two cases of EDS are exactly alike, which complicates the diagnostic process.
• Unclear classification – The criteria for diagnosing EDS remain somewhat ambiguous, leaving many patients in a diagnostic gray area.
• Skepticism toward chronic pain – Because EDS-related pain is often invisible, some doctors dismiss or minimize patients’ symptoms, delaying proper recognition and care.

The Challenge of Getting Diagnosed

EDS testing and diagnosis can be a long, frustrating journey. Many patients struggle to find doctors who understand their symptoms, and even when they do, referrals to knowledgeable geneticists can be hard to come by. Because of this, countless individuals with undiagnosed EDS continue to experience chronic pain, fatigue, and systemic issues without ever knowing the underlying cause.