Friday 25 October 2013

Ehlers Danlos Syndrome & Child Protection

Ehlers-Danlos Syndrome & Child Protection Concerns

Jan Loxley Blount TCert., Dip Child Development
 for Parents Protecting Children UK, October 2013

“Once the label of child abuse has been attached to a parent it is extremely difficult to remove. Yet we know that there are many hard to diagnose conditions that have been mistaken for parental maltreatment with devastating consequences for families.” Earl Frederick Howe to House of Lords 12.02.03

Ehlers-Danlos Support UK and Parents Protecting Children UK are amongst those groups who have recently come to realise that there are a number, as yet unquantifiable, of Ehlers-Danlos Syndrome families who appear to be inappropriately caught up in the Child Protection and Family Court System.

Ehlers-Danlos Syndrome is genetic, heritable and familial. Someone with Ehlers-Danlos Syndrome may be caring for another or others within the same family also affected by EDS, although the type, severity and symptoms can differ. It may be that diagnosis of one family member may throw light on unexplained symptoms, which have been missed in their close relatives.

There appears to be an unproven link or crossover between Ehlers-Danlos Syndrome and some Autism Spectrum Difficulties & Differences, although this has not yet been adequately explored. Many spectrum children appear to demonstrate the kind of hypersensitivities and hypermobility, which may be indicative of Ehlers-Danlos Syndrome. Social Workers have been known to comment on the untidiness of the home of a spectrum family, in some cases this could be because parents are struggling with fatigue derived from undiagnosed Ehlers-Danlos Syndrome. Some Ehlers-Danlos Syndrome families appear to over-react or react aggressively to suggestions that there might be child protection concerns; this reaction may be through sheer terror, which is often exaggerated in spectrum families or individuals. There is none so dangerous as the tigress defending her cubs from perceived danger. If a mother, especially a spectrum mother, fears the loss of her children to Social Services, her reactions may be regarded as excessive or inappropriate by those who seek to judge her.

It is becoming apparent that some cases previously diagnosed as ME / CFS may be symptoms of chronic fatigue caused by Dysautonomia and Postural Orthostatic Tachycardia Syndrome, resulting from undiagnosed Ehlers-Danlos Syndrome. Some of the Fibromyalgia symptoms experienced by many ME / CFS sufferers could be symptomatic of Ehlers-Danlos Syndrome. It is possible, but unproven, that the longstanding argument within the ME / CFS community about the benefits or harm of graded exercise, could be that those with ME / CFS type symptoms caused by Ehlers-Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome improve through graded exercise, which develops muscle power to compensate for defective collagen and thereby improves cardiovascular function; whereas those with actual Myalgic Encephalomyelitis may not benefit from and could be harmed by inappropriate exercise. It seems important to us that GPs are alerted to simple protocols for testing all patients presenting with chronic fatigue symptoms for positional blood pressure differences (which may indicate Postural Orthostatic Tachycardia Syndrome) and for checking joint hypermobility on the Beighton Score.

Some infants and small children suffer spiral and other fractures and joint dislocations which at first glance may appear to be caused by rough handling, but on more detailed consideration of context and symptoms may indicate Ehlers-Danlos Syndrome.

There is a recent complex judgement by the Honourable Mr Justice Baker, February 2013, which involves an Ehlers-Danlos Syndrome family. Mr Justice Baker highlights the need for medical and legal expertise that should not be rushed. He suggests that it is very difficult for the judiciary if cases of this complexity are brought by litigants in person.
Devon County Council v EB & Ors (Minors) [2013] EWHC 968 (Fam)

EDS UK & PPC.UK are currently seeking information about other such cases and will be pleased to hear from anyone who can help us. Rachel Carter, Associate Solicitor at Wollen Michelmore Solicitors appears to have some knowledge of this area. We are not suggesting that she is the best or the only solicitor working in this area, however we are naming her because she is the only one who has made herself known to us at this time and because Wollen Michelmore were the instructing solicitors for the parents in the case before Mr Justice Baker cited above.

This is an initial tentative and exploratory document, written because of a rising level of concern.  There is much to be explored, some already begun, some much needed and hoped for. Ehlers-Danlos Support UK & Parents Protecting Children UK are committed to further investigation and will comment in more detail when we have more knowledge and information.

EDS UK has a survey document that we are using to gather information about child protection interventions in families with Ehlers-Danlos Syndrome. We invite Ehlers-Danlos Syndrome families to complete this. LINK TO REGISTER DETAILS

The views expressed in this document are those of the writer,
Jan Loxley Blount, T Cert., Dip Child Development.
(C) Jan Loxley Blount, London. 24.10.2013

Ehlers-Danlos Support UK
EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome.
EDS is a collection of inherited conditions that fit into a larger group known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones.
Connective tissue covers over 95% of your body so there is little that escapes the symptoms.

Parents Protecting Children UK
Parents Protecting Children UK was formed in October 2001 at the time of the House of Lords Debate on False Accusations of Child Abuse, PPC.UK aims to support families with illness, disability, mental health concerns and learning difficulties, who need additional education or healthcare resources
and/or who find themselves caught up in the child protection and family court system.


  1. This document, written yesterday by me on behalf of Parents Protecting Children UK, has now been medically verified by the trustees of EDS.UK and is going on their website as well as that of Parents Protecting Children UK & the Parents Protecting Children UK FB page. I will also post it on my personal blog (link below).

    It can be reproduced in its entirety on websites or other social media sites, but we request that no changes are made and that extracts are not taken and used out of context. The acknowledgements & links to EDS.UK & PPC.UK should not be removed.  

    We would like to draw your attention to the Parents Protecting Children UK survey document which will help us to collect information about cases of possibly inappropriate child protection interventions, based on misunderstanding of illness, medical conditions, disability, neurological difference, mental health concerns or learning disabilities.

    Very Best Wishes

    Jan Loxley-Blount

  2. This comment has been removed by the author.

  3. It's great that you are doing this, but I think there is a non-trivial error in this sentence: 'It seems important to us that GPs are alerted to simple protocols for testing all patients presenting with chronic fatigue symptoms for positional blood pressure differences (which may indicate Postural Orthostatic Tachycardia Syndrome) and for checking joint hypermobility on the Beighton Score.' It is orthostatic hypertension which leads to positional blood pressure differences. Postural orthostatic tachycardia syndrome leads to positional heart rate (NOT blood pressure) differences, hence the 'tachycardia' part of the name. If you want to check this, have a look at the POTS UK website.

  4. Whoops, I meant 'orthostatic hypotension' and not 'orthostatic hypertension'...