Just some things I have noticed over the years. Of course, not everyone with hEDS will have these things and that’s ok. These really don’t mean anything. ❤️‍🩹 #greenscreen

2025/8/3 Edited to

... Read moreHypermobile Ehlers-Danlos Syndrome (hEDS) is a complex connective tissue disorder characterized primarily by joint hypermobility, skin texture differences, and chronic pain. Beyond the well-known symptoms, many people with hEDS report having additional unusual traits that seem frequent among this group. One such observation is the association with difficulties in temperature regulation, often evidenced by vasal constriction in fingers and toes, which can lead to color changes and numbness. This vascular phenomenon reflects the fragile nature of connective tissues affecting blood vessel stability. Another notable feature includes dermatological signs such as unusual rashes or skin sensitivity. Though hEDS is not directly linked to inflammatory skin diseases like lupus, some patients experience red, rash-like symptoms that could reflect underlying tissue fragility or autoimmune overlaps. Awareness of these dermatological features is essential for proper diagnosis and management. Patients often report varied neurological symptoms like numbness or tingling sensations, which could be due to nerve involvement or vascular issues related to connective tissue disorders. Such sensory changes warrant comprehensive evaluation to exclude other causes. Interestingly, many individuals with hEDS recount initial misdiagnoses, typically as other rheumatologic conditions. This highlights the challenges in identifying hEDS early and the importance of specialist assessments by rheumatologists familiar with the disorder. Hair texture and other subtle systemic signs, though less commonly emphasized, have been noted and could contribute further to a personalized clinical profile of hEDS. Understanding these less typical yet recurrent traits broadens the clinical picture of hEDS. It emphasizes the need for a multidisciplinary approach to care, including rheumatologists, dermatologists, neurologists, and physical therapists to address the varied manifestations effectively. Comprehensive management strategies improve quality of life and reduce complications associated with this hereditary connective tissue disorder.

2 comments

betty mea walsh's images
betty mea walsh

I just got diagnosed with fatty liver and I don't drink.

Glitter Witch 1968's images
Glitter Witch 1968

Have a great time in Chicago! Happy Anniversary!!

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