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 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.
The event started with a series of presentations from doctors, members of the HSD and EDS community, advocacy groups, and a legal perspective. Following on from these presentations, a number of individuals and organizations, including some of the presenters met to discuss ways forward.
This group has agreed to form a coalition, AHEAD – Action for Children & Young People with EDS & HSD Accurate Diagnosis, and to invite other representatives to join it from groups and organizations involved in the welfare of children and young people, and their families. In addition, the coalition will invite specific leaders and organizations to join and advise on projects established by the coalition.
The AHEAD coalition recognizes the need to consider issues geographically and will develop subgroups to explore specific concerns at a regional level.
A number of areas were discussed relating to infancy, childhood, and younger people. Across a wide range of concerns, there is a need to review existing evidence and the gaps in these that need addressing. These include complications of EDS and HSD, gaps in clinical and social service support for EDS and HSD, and the evidence cited, reasoning and outcomes of clinical, social service, and court decisions in EDS and HSD-related child abuse cases.
The Pediatric Working Group of the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders is a member of the coalition. The group has met and determined that a priority is the review of the diagnostic criteria for children and young people and have embarked on this work.
The AHEAD coalition will be convening again shortly to begin the planning of its work.