FACS SYNDROME

I have a friend who is an amazing woman. She is Emma Murphy and she is the co-founder of In-FACT & FSA. She is a campaigner & mum of 5 children aged between 3-9 who are  ALL  affected by FACS SYNDROME & she is  raising awareness to help the thousands affected by this condition.

Watch BBC Panorama next Monday night “The Truth about Pills and Pregnancy” http://www.bbc.co.uk/programmes/b036fddg

Since the drug Sodium Valproate (Epilim) appeared on the market in the late 1970’s,  there has been numerous medical journals and research papers released discussing it’s dangers and the damages it may cause when taken during pregnancy, and in some cases has been named as the New Thalidomide.

The drug Sodium Valproate was introduced onto the UK market in 1973 and became the ‘drug of choice’ for clinicians during the 80’s, 90’s and into the 00’s.  Since its introduction a large number of children have been born to women with Epilepsy taking this drug with numerous difficulties and abnormalities diagnosed as Fetal Valproate Syndrome (FVS), under the umbrella of Fetal Anti-Convulsant Syndromes (FACS).

However, the drug is no longer just being prescribed for Epilepsy, but is now given for a range of neurological problems such as Bipolar, Migraine Headaches and Pain Relief.   In the UK alone over 1300 children are diagnosed with Fetal Valproate Syndrome each year.  As the drug has been on the market for over 35 years, this means there may be around 45,000 people affected by this drug costing the UK Government millions of pounds each year in health care, education, social services and benefits for the families whose children have been affected.

The first report which involved children being affected by Sodium Valproate (Epilim) was published in 1981, written by H Nau entitled ‘Valproic Acid and its Metabolites’.

The problems being caused by Sodium Valproate were noted in the 80’s by the Medicines & Healthcare Regulator Agency (MHRA) and the drug was closely watched,  with the definitive journal paper appearing in 1995 stating there was such a syndrome.  The paper was written by geneticists at St Marys Hospital in Manchester and was entitled ‘Fetal Valproate Syndrome’ clearly outlining all the problems which the children were suffering from.  Over the years there has been a large number of journal papers reporting on valproate in pregnancy with  an accumulation of data released recently highlighting an association between prenatal exposure to the drug and altered child neurodevelopment.

The Independent Fetal Anti-Convulsant Trust (IN-FACT) want a system set up to support damaged children on an annual basis as lives have been ruined by a medication designed to make life better for women with Epilepsy.  We would also like to see women taking medications during pregnancy able to make a more informed choice and so insist on a better detailed system providing advice.

As a Trust, at the moment we are only working with raising the issues concerning the drug Sodium Valproate (Epilim), however there are 9 other drugs on the market which also cause Fetal Anti-Convulsant Syndrome (FACS).

The Independent Fetal Anti-Convulsant Trust (IN-FACT) which was launched in November 2012 by Janet Williams and Emma Murphy.  IN-FACT will be interlinked with the FACS Syndrome Association (FACSA) also set up by Janet and Emma to support the families affected so that they will only have to register once.   Working with 5 Medical Advisors experienced in this field, together with the support of the Thalidomide Campaign Team, IN-FACT intends to push on with its Campaign for compensation from both the drug company Sanof and the Government for the affected people enabling them to lead a more productive life.

A petition has been launched with 38 Degrees called “Drug Justice”:

http://you.38degrees.org.uk/petitions/make-pharmanceutical-companies-pay-for-their-mistakes

This is to ensure companies such as Sanofi and Grunthenthal are held accountable for the damage they have caused to thousands of children/adults.