The truth is that you don’t have to dislocate your joints to have Hypermobile Ehlers Danlos Syndrome. I think it’s unfortunate that most people attribute dislocations and stretchy skin with hEDS, and, according the the 2017 diagnostic criteria for hEDS, you don’t have to have dislocations or stretchy skin to have hEDS. Which is why I’m so passionate about setting the record straight. ❤️‍🩹

2025/8/13 Edited to

... Read moreHypermobile Ehlers-Danlos Syndrome (hEDS) is often misunderstood, with many people associating it solely with dramatic symptoms like frequent joint dislocations and visibly stretchy skin. However, according to the 2017 hEDS diagnostic criteria, these symptoms are not necessary for a diagnosis. This distinction is important to reduce stigma and improve awareness. The 2017 criteria emphasize a combination of hypermobility, musculoskeletal pain, and systemic manifestations rather than just joint dislocations or skin elasticity. Many individuals with hEDS experience subtle or chronic symptoms such as joint instability, chronic pain, fatigue, and issues with proprioception without obvious outward signs like dislocations. It is essential to understand that hEDS symptoms can vary widely among patients, and the condition can affect daily life in many less visible ways. For example, some may encounter difficulties with swallowing, breathing issues, or digestive problems, reflecting the syndrome’s systemic impact beyond joints and skin. Medical professionals stress the importance of careful assessment rather than relying on visible dislocations or stretchy skin alone. Early diagnosis and appropriate management can significantly improve quality of life by addressing pain, preventing injuries, and tailoring treatment plans. Increasing patient and public education on the nuanced presentation of hEDS supports a more accurate understanding and compassionate approach. Awareness campaigns highlighting these facts can help dispel myths and foster better diagnostic practices. For those who suspect hEDS or experience unexplained joint or connective tissue issues, consulting specialists familiar with the 2017 hEDS criteria is advised. They can provide thorough evaluations and personalized care recommendations to manage symptoms effectively. Ultimately, dispelling misconceptions about hEDS emphasizes the importance of seeing beyond visible dislocations or stretchy skin and recognizing the broader, systemic nature of this complex connective tissue disorder.

2 comments

Lyssa Lynn's images
Lyssa Lynn

hmmmm, I didnt know some of those were eds!

Mia Bishop's images
Mia Bishop

I have so many of these, but my doctor refuses to even consider EDS. I love your content.

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