Since voluntarily starting the FACS Syndrome Association (FSA – Parent Support Group) and also Independant Fetal Anti Convulsant Trust ( In-FACT)with colleague Janet Williams in November, things have been manic, but in a good way. In-FACT was set up to raise awareness in Government about FACS SYNDROME and the effects the medicine Epilim is having on thousands of babies up and down the country.
Last week a medical journal was published stating the fact that if mothers take Epilim in pregnancy there child will suffer from Neurodevelopmental disorders – ultimately leading to a diagnosis of Facs Syndrome. For the families affected by FACS this paper has been a huge breakthrough. Even more so families particularly the mums who have taken the medication, have been waiting for. Even though the drug company have always stated :
“We have kept in line with scientific knowledge”
There generic statement that the drug company always issue to the press.
This paper proves otherwise and that they have always known about it.
Tuesday 5th February we, In-FACT, held a national press conference down in London at Parliament to appeal for any ladies from the year 1973 to present day, who were taking Epilim during pregnancy to come forward and get in touch with us. Typically it was wrong timing as it clashed with the debate on Gay Marriages but never the less we had a really good turnout. We were accompanied by part of our team Dr Peter Turnpenny (eminent Geneticist) and also members of The Thalidomide Campaign Team (Mikey and Guy). Media attended and we have since done articles and interviews with the media, newspapers and tv.
MP Ivan Lewis and me
Having returned back home to the kiddies and Joe we have since had news yesterday that is really big and yet again takes the campaign into a new dimension. We applied for an Early Day Motion (EDM) as advised by the Thalidomide Campaign Team, and yesterday have been informed that it has been accepted. MPs will show support by signing this and once we have a certain amount of signatures the Government have to acknowledge our request . The press conference has proved really well as parents/ ladies who were on the Epilim in pregnancy are now coming forward, so all the hard work weve been doing has been worthwhile as people are finally taking notice.
Other things within Parliament are in place too and until they are confirmed I cant really say about it. What I can say though is this issue is being taken very seriously. A few years back when the MMR scandel broke, everyone was panicking about their children (and rightly so) and at that point it was just a THOUGHT / PRESUMED that Autism was linked to the injections. The big thing with Epilim is that the journal paper released CATEGORICALLY STATES that Autism is linked to taking Epilim and if taken in pregnancy your child will develop this. The more awareness in the media that is raised it will alarm parents who are on the epilim. However if the Department of Health, Government and the drug company are not going to put specific warnings and continue to ignore this, its going to carry on and when will it stop?? Whilst the Government are now enforcing “Bedroom Tax” they also have to take a serious note of this….. the taxpayer is paying for the thousands of children affected. In 2011 the drug company made 311 MILLION pounds PROFIT on Epilim alone. It should be them supporting all the children and adults affected not the taxpayer.
Emma4facs Official Twitter page now on Facebook :
Facs Syndrome Association also on Facebook