The History Behind FACT

The Fetal Anti-Convulsant Trust (FACT) was launched on 14th July 2011 with a view to providing support to the people who have disabilities as a result of their mothers taking an Anti-Epilepsy medication during pregnancy.

The Trust was established as a result of the collapse of the litigation against one of the largest pharmaceutical companies in Europe in 2010 and to run alongside its sister charity the Organisation for Anti-Convulsant Syndrome (OACS) which was set up in January 1999.

Many years, leading up to the beginning of the litigation in 2005, the majority of medical journals reported on the Major Malformations caused through mothers taking anti-convulsant medications during pregnancy, for example Spina Bifida, Cleft Lip & Palate, Limb Abnormalities and Heart and Kidney Malformations.  However, in the years leading up to the end of litigation in 2010 it became apparent through more up to date literature and reports,  that the victims of FACS also suffered other disabilities such Speech and Language problems, Cognitive impairments including attention and memory difficulties, Gross and Fine Motor Control problems, Visual problems, Joint laxity and poor muscle tone, Dysmorphic Facial features and Autistic Spectrum Disorders.  Many children had undergone numerous operations before reaching 10yrs old, some for the usual childhood illness such as a tonsillectomy, grommets fitted and squints straightened but others for the major malformations.

Although, up until this time FACS had been known to be rare the percentages and possibilities for affected children continued to climb and in 2010, with the incusion of cognitive impairments reached over 25% (40,000).  A large amount of FACS affected people, by this time had reached their teenage years and over, but we were aware that diagnosis had been rare also which made contacting these people a challenge, but a possibility with the help and support of our sister charity OACS.   By this time the trustees of FACT and OACS and the majority of parents involved were aware of the help and support they required to live their lives accordingly, the support they needed and what wasn’t available.  With the widespread age group of the people affected FACT were able to set their objectives realistically with a view to a more productive understanding of what the sufferers and their families needed.

The intentions of the Trust is to ensure the victims of anti-convulsant medications taken during pregnancy, are appropriately looked after when their parents can no longer do so and  the funding that allows them to do so comes from the correct sources.