Among its focus areas will be misdiagnoses, evidence gaps in medical complications, and child abuse.
The nascent AHEAD coalition — Action for Infants, Children & Young People with HSD & EDS Accurate Diagnosis — will comprise physicians, HSD and EDS community members, advocacy groups, and other stakeholders, including groups representing the welfare of children and their families.
Other specific leaders and organizations will be invited to join the coalition and advise on projects. In addition, subgroups will be developed to look into specific issues at a regional level.
The coalition came about following a recent virtual awareness event, “Pediatric Concerns in EDS & HSD: Exploring the Impact of Misdiagnosis.” The event included an expert roundtable discussion and touched on issues surrounding misdiagnoses, including delays in care, patient mistreatment, child abuse allegations, and legal perspectives. The impact of these factors on physical and mental health was a key concern voiced by participants.
AHEAD members will include the pediatric working group of the International Consortium on Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders. The group has already begun work on a top priority: a review of the diagnostic criteria for children, who may not become noticeably symptomatic until their teen years. Many young patients’ symptoms are so mild that they go unnoticed, though others may be severely affected.
“Across a wide range of concerns, there is a need to review existing evidence and the gaps in these that need addressing,” the society states in a press release. “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 global awareness event was prompted by reports from a growing number of EDS patients and family members of being diagnosed with a fictitious disorder — a mental condition in which a person deceives others by appearing ill, purposely getting sick, or self injury. The disorder also includes incidences in which family members or caregivers falsely present children or adults as being ill, injured, or impaired.
“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 society stated. “The Ehlers-Danlos Society would like to understand why this is happening and what role nonprofit organizations and charities can do to support better understanding in our communities, among clinicians and social services.”
While the society makes clear that any concerns about possible child abuse should always be carefully explored, it noted that some EDS and HSD features can resemble injuries commonly seen in physical abuse. In addition, some symptoms are similar to those that are associated with fabricated illness, the organization states.
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