The Ehlers-Danlos Society has heard 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.
On January 10, 2021, The Ehlers-Danlos Society hosted an awareness event exploring the misdiagnosis of hypermobility spectrum disorders [HSD] and Ehlers-Danlos syndromes [EDS] and child abuse. The event started with a series of presentations from doctors, members of the HSD and EDS community, advocacy groups, and a legal perspective. Following these presentations, a number of individuals and organizations from around the world, including some of the presenters, met to discuss ways forward.
This group 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 agreed to invite specific leaders and organizations to join and advise on projects established by the coalition. The AHEAD coalition also recognized 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, the coalition determined that there was a need to review existing evidence and gaps that need addressing. These include:
- Complications of EDS and HSD
- Gaps in clinical and social service support
- The evidence cited, reasoning, and outcomes of clinical, social service, and court decisions in EDS and HSD-related child abuse cases
The coalition determined that a priority was the review of the diagnostic criteria for children and young people.
The Pediatric Working Group of the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, a member of the coalition, embarked on this work. The Working Group met over 2020–2022 to review the challenges of diagnosing children and adolescents using the 2017 diagnostic criteria for hEDS which were developed for adults.
In May 2023, the group of experts published a new diagnostic framework that can be used to assess people from five years old through to biological maturity. Biological maturity is marked by the completion of puberty and bone growth or when a person reaches eighteen years old, whichever happens first.
The AHEAD coalition will be convening again shortly to begin the planning of its work.
