Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affects thousands of people worldwide. Despite growing awareness, there are still many misconceptions about EDS that can lead to misunderstanding, misdiagnosis, and even stigma for those living with the condition. In this blog post, we’ll debunk some of the most common myths about EDS and shed light on the realities of this complex disorder.
One of the most pervasive misconceptions about EDS is that it’s simply a condition that makes people "double-jointed" or unusually flexible. While hypermobility is a hallmark symptom of some types of EDS, it’s far from the whole picture. EDS affects connective tissues throughout the body, which means it can impact the skin, blood vessels, internal organs, and more. Symptoms can include chronic pain, frequent joint dislocations, fragile skin, and even life-threatening complications in severe cases.
EDS is a systemic condition, not just a "flexibility quirk." It requires proper medical management and understanding to address the wide range of symptoms and challenges it presents.
Another common misconception is that EDS is so rare that it’s unlikely someone you know could have it. While some types of EDS, such as vascular EDS, are indeed rare, the hypermobile type (hEDS) is believed to be much more common than previously thought. However, due to a lack of awareness and diagnostic challenges, many cases go undiagnosed or misdiagnosed.
EDS, particularly hEDS, may be underdiagnosed rather than rare. Increased awareness among both the public and medical professionals is crucial to improving diagnosis rates and patient outcomes.
While it’s true that EDS is often diagnosed more frequently in women, this doesn’t mean it’s a "women’s condition." The higher diagnosis rate in women may be due to differences in how symptoms present or are reported, as well as potential biases in the healthcare system. Men, nonbinary individuals, and people of all genders can and do live with EDS.
EDS is not gender-specific. It affects people of all genders, and everyone deserves equal access to diagnosis and care.
EDS is a highly variable condition, even among people with the same type. Some individuals may experience mild symptoms, while others face severe, life-altering complications. This variability can make it difficult for people to understand the full spectrum of the disorder.
EDS is a spectrum disorder, and no two cases are exactly alike. Each person’s experience with EDS is unique, and treatment plans should be tailored to their specific needs.
Because EDS is a genetic condition, some people assume that there’s no way to manage it effectively. While there is currently no cure for EDS, there are many ways to manage symptoms and improve quality of life. Physical therapy, pain management, lifestyle adjustments, and regular monitoring by healthcare professionals can all play a role in helping individuals with EDS live fulfilling lives.
While EDS cannot be cured, proactive management can make a significant difference. Early diagnosis and a multidisciplinary approach to care are key.
Unfortunately, many people with EDS face skepticism about their condition, especially when their symptoms are invisible or misunderstood. Chronic pain, fatigue, and other symptoms can lead to unfair judgments from others, including healthcare providers.
EDS is a real, medically recognized condition that can cause significant physical and emotional challenges. People with EDS deserve empathy, support, and validation—not judgment.
Ehlers-Danlos Syndrome is a complex and often misunderstood condition, but debunking these common misconceptions is a step toward greater awareness and acceptance. By educating ourselves and others, we can create a more supportive environment for those living with EDS. If you or someone you know is affected by EDS, remember that you’re not alone, and there are resources and communities available to help.
Do you have any questions or experiences with EDS that you’d like to share? Let us know in the comments below! Together, we can continue to spread awareness and understanding.