EDS/HSD vs Child Abuse
Any concern raised about possible child abuse should always be considered carefully. However, some things known to be features of the Ehlers-Danlos syndromes and hypermobility spectrum disorders can look like injuries seen in physical abuse. Some things can appear very similar to symptoms or behavior that could be thought to be fabricated illness. In addition, it is absolutely understood that self-harm is common in children and adolescents in general and that this arises for a number of different reasons. Self-harm may be clear from the nature of the injury and a full assessment, and is not considered âchild abuseâ, but would itself identify the need for psycho-social and medical support dependent on the cause(s).
When the explanation given does not appear to match the injury or illness found, health and social/welfare staff and law enforcement staff are obliged to report their concerns if they think someone may be a victim of abuse. These staff may or may not be familiar with conditions like EDS or HSD.
There are ways to help those assessing concerns over abuse. Some key things to consider in EDS are:
Is there a confirmed diagnosis of EDS and how has this presented over time, as an individual? It is important to have a clear picture of the ânatural historyââi.e. how the condition has affected them to date. Not everyone with EDS has the same set of concerns or severity of concerns. Is what has happened normal for them or abnormal for them? If it is abnormal, why might this have happened? Are there explanations other than abuse for the change in the pattern or type of injury or behavior?
If either or both biological parents have EDS or a similar condition this may help to guide opinion but ultimately it is important to know whether the child or adolescent has the condition.
Have those raising the concern consulted a professional who has experience diagnosing and treating EDS, if they do not have that expertise themselves?
With regard to fractures, have other medical causes known to be associated with fracture been considered, and is the type of fracture a recognized or reasonably a potential complication of that condition?
Around the world, there may be differing policies and laws when dealing with child abuse. Advice should be sought from a legal representative familiar with local policy and law.
Whenever possible work with the health, welfare, and law enforcement staff. In doing their job they are obliged by law to report their concerns. The welfare of the young person will be at the forefront of their minds.
It is inevitable in complex cases that multi-disciplinary input is needed, but in the presence or possible presence of EDS, this should include an expert opinion in EDS and the heritable disorders of connective tissue.
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