We understand just how difficult a diagnosis of a life changing medical condition such as Ehlers-Danlos Syndrome or Von Willibrand can be for your family.
The early days following diagnosis can be bewildering and upsetting, unfortunately for some families they are caught up in the Child Protection and Family Court System and in certain cases this results in some families who have had their children taken into care because of unexplained bruising and injuries.
Annabelle bruised very easily as a baby; her medical conditions include Von Willibrand and vascular Ehlers-Danlos Syndrome.
On many occasions we have had to defend her bruising to people staring at her assuming that we were harming Annabelle.
Fortunately for us we pushed our NHS trust for further testing and although it has taken over 3 years of tests we finally got a diagnosis.
We understand the frustration you might be going through if you are struggling with your local GP / medic professional and in extreme cases, social services.
A significant number of parents have been contacting us with their concerns over a reluctance to be referred for further testing by a GP, this may be partly due to the lack of knowledge and understanding of EDS or even funding issues.