Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis
January 10, 2021
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. We note that Ehlers-Danlos syndromes are being listed as a condition to be concerned about, in situations where factitious injury or illness is suspected. The Ehlers-Danlos Society would like to understand why this is happening, and what role non-profit organizations and charities can do to support better understanding in our communities, among clinicians, and social services.
We intend to start this process on January 10, 2021 with a virtual awareness event Pediatric EDS and HSD: Exploring The Impact of Misdiagnosis, where the EDS and HSD community, health professionals, organizations, and the general public will hear from members of our community who have been affected by a child’s misdiagnosis: delays in care, mistreatment, allegations of child abuse, and the impact on physical and mental health. This is a free event, accessible to all, globally.
To identify collaborative ways forward and priorities we will then bring together senior clinicians and executive staff from The Ehlers-Danlos Society, Ehlers-Danlos Support UK, HMSA, other charitable organizations, senior clinicians in Pediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services, for an expert roundtable discussion, outlining practical changes which need to be made to support the community.
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