If you can copy and paste this over?
I am going to find some links and research on it. There is quite a bit on the EDSUK and HMSA websites available for all to see.
I have a concern around the subject of rare genetic connective tissue disorders such as Ehlers Danlos Syndrome and the high levels of non accident injury and FII accusations made against parents with children of this condition. A ruling was made last year and published in Family law week I believe, regarding non accidental injury and EDS. Having spoken in large group settings organised at the Ehlers Danlos Support UK conferences, there seems to be a large number of Mothers who also have the same condition of FII. The numbers of parents reported to social services, that have gone on to be seen one particular Dr are out of proportion for one small group of the population, the last quote was 50-60%. I can provide contact details for this Dr if you want to verify the information. There is I gather debate if FII even exists, or if the symptoms are of a personality disorder. I am sure that there will be in the EDS community the same levels of FII/personality disorders as there is in the rest of the population.
So why do I think there are so many reports of this by professionals to social services?
Well there is a high proportion of Autistic diagnosis's in the community apparently.
There have also been brain scans showing that the Amagadala works differently in hypermobile people, where as someone with antisocial personality disorder would have not much going on we seem to have far too much going on here.
We have issues with pain, and Anesthetic not working.
There is still so much to be found out, there is some interesting work done by Dr Driscoll, who feels here Driscoll theory has been proven. She has theories about mast cells and pressure levels in the brains of EDS people.
The parents will have not had their medical needs met and once they understand what has happened they will be keen for the children not to suffer also as they have. When you discover the complexity of what has been going on in your bodies and written off for so long, you go through all the stages of grief for yourself and for your children.
There are often undiagnosed secondary issues, for example it was only in November 2013 there was a proven link between sleep apnoea and EDS. There are complex GI issues and Neurological /cardiac issues from our autonomic system not functioning properly. These will interfere with the cognative ability of the parents and children. They will make them appear to have a primary mental health issue which is a secondary mental health condition, heal the physical cause and they will not have anxiety and depression. We look like there is nothing wrong with us, we don't complain and we get on with things.
We are not helped by the fact there are two names for what is through to be the same condition, some Dr's seem to have different idea's and the two charities not working together.
Right now I understand the department of Health, NHS national genetic EDS clinic think EDS and HMS (Hypermobility Syndrome) are to be treated as the same condition along with EDSUK, yet some other high profile NHS hospitals along with HMSA have other ideas.
Here are some links
www.hypermobility.org
www.ehlers-danlos.org