On Monday Night, BBC Inside Out featured the dangers of Epilim taken in pregnancy. Me and Janet filmed this programme around a month ago whilst we were in London holding our National Press Conference. The reason for the press conference was because a new journal paper – NEADS Study – was published recently categorically stating children exposed to Epilim in the womb have a 6-10 times increased prevalence of Neurodevelopmental disorders (AUTISM etc)and would therefore be affected by Epilim.
Figures from our medical team state that since the drug came onto the market in 1973 approximately 48,000 babies have been exposed to Epilim and 20,000 babies are effected. We held the press conference to address the media about the journal paper, but to also appeal to any ladies who have taken the drug since 1973 to come forward and get in touch. It is our aim at In-FACT (Independant Fetal Anti Convulsant Trust) to raise awareness within Government and to call for an Independant Enquiry. At present we have an Early Day Motion (EDM) set up in which MPs sign to support our request for an Independant Enquiry and its going really well. The producers of the documentry Zack and Paul did a fabulous job, the programme was brilliant and went well into depth which to be honest, didnt expect. We will always be so grateful to them both for doing such a brilliant job.
Since the programme went out I was featured in my local paper The Manchester Evening News. Ive been featured in articles before to raise awareness of FACS Syndrome but this was a lot more in depth too. (See below)
The Daily Mail newspaper have featured articles before of myself and also other families whose children are affected by FACS, and yet again my article made it onto the Daily Mails Webpage. I knew I shouldnt have done it but I read the comments underneath in which the public can comment. Reading them I was so upset and spent the rest of the day crying
Looking at the title, I can see what people are thinking : MUM OF 5, ALL ON BENEFITS, DOESNT WORK, WHY DID SHE HAVE 5 KIDS, DID SHE NOT KNOW THE EFFECTS OF MEDICATION …….. your typical Jeremy Kyle (I do love Jeremy though!!) People really shouldnt be quick to judge. When I was put on Epilim, it was to control my seizures and at 12 I wasnt exactly planning a family. When you think of all the Drs, midwives etc you see when a woman is pregnant, the fact that on my insistence on my 5th pregnancy the medication was changed, people cant believe not one Dr told me of the warnings. This is the point of the whole campaign, that to this day IT IS STILL HAPPENING. Another point of our campaign is, it shouldnt be the taxpayer paying for all the effected children, who will need care for the rest of their lives…..it should be the drug company Sanofi. They knew the effects of this medicine even though they claim they never. In 2011 they made 388 MILLION alone on Epilim, a drug they knew have been affecting babies and only threw campaigning have been shamed into doing things, so it shouldnt be taxpayers paying for this scandal. They need to accept corporate responsibility and support the children and families that their drug has damaged.
There is the negative response from the press, but there is also the response from parents. Since it aired, we have been inundated from parents who have watched the documentry or seen it in the papers. It is overwhelming to think that parents have children with all these symptoms, never been informed by there medical team looking after them, yet are faced with it from the media. It is for that reason why it has to carry on. To help, give support and advise parents with the needs for there children. To put procedures in place so that it doesnt carry on happening, so that ladies have the choice that I and many other mums never had.The FACS Syndrome Assosiation (FACSA) is the parent support group voluntarily set up by myself and Janet to be there for parents if they have any queries. We have a Parental and Educational Officer working with us and have now produced parent packs for parents who do get in touch, so they have information and somewhere to ring to for advice.
Both FACSSA and In-FACT are entwined and work together to ensure that parents receive the best of both worlds while trying to avoid duplication of registering with both parties so your details are shared. Once parents have registered with FACSA their information and details will be stored confidentially on our database.
IF ANYONE READING THIS HAS ANY CONCERNS ABOUT EPILIM etc OR KNOWS A FRIEND/RELATIVE WHO HAS BEEN ON IT …..DO GET IN TOUCH
FOR MORE INFORMATION PLEASE GO TO : firstname.lastname@example.org