Tag Archive: child protection

AHEAD - Action for Infants, Children and Young People with HSD and EDS Accurate Diagnosis.

Pediatric Concerns in EDS and HSD: Exploring the impact of misdiagnosis

On January 10, 2021, The Ehlers-Danlos Society hosted an awareness event exploring misdiagnosis of hypermobility spectrum disorders [HSD] and Ehlers-Danlos syndromes [EDS] and child abuse. The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self
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Child Protection in EDS and HSD Roundtable Discussion

The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self, or, more typically a parent on a child. People have spoken publicly at meetings and shared the most harrowing and heart-breaking stories that have had
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Fighting for my validation for my child

My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost
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