2 years ago I joined Twitter to raise awareness of FACS. Finding that it was classed as a “rare condition” yet considering so many people were affected was hard. Constant re tweets, sending links to absolutely anyone and everyone, people must have presumed I was some neurotic housewife on a rampage, as I had previously been seen as. The medicinal world never believed me when I found out about FACS Syndrome, even before then when I had a feeling something wasnt right with the kiddies …… always reassured and given the brush off.
Recently a lot of media have picked up on my families story. It was featured in The Daily Mail a number of times and I took part in a documentary made with BBC Inside Out. Since the programme has aired the response from the public has been huge and overwhelming. Below is a letter from a parent who got in touch with his MP after seeing the article in the paper.
Dear Mr Bayley,
I am writing to you as a constituent to ask you to support the Early Day Motion, EDM 1021, which relates to children who have Fetal Anti-Convulsant Syndrome (FACS) caused by their epileptic mothers unwittingly taking Sodium Valproate (brand name Epilim) during pregnancy.
Until 11th February 2013 I had no knowledge of FACS, and it was only by chance that I read an article about it in the Sunday Times dated 3rd February 2013.
As father of T who is aged 29, who was exposed to Epilim whilst in the womb, it made chilling reading!
T is quite definately on the autistic spectrum, although I dont think she has had any more precise diagnosis than this. As to the cause of T’s autis, I had long ago put it down to cruel chance, and in theory it may just be that. However the result of T’s epileptic mother taking the drug Epilim for an entire gestation period in1983 is in line with the results of the survey initiated in 2000 of mothers who similarly took Epilim during their gestation periods.
If nothing else I understand the heartbreak of having a profoundly handicapped child, but it is utterly sickening to think that a drug company could be the cause of such a profound handicap!
It seems that a large minority of children whose mothers took Epilim during pregnancy, possibly as much as 35%, have been adversely affected by the drug. The parallels with Thalidomide are obvious, but the scale of devastation caused by Epilim on pregnant women is far greater than that of Thalidomide!(17,000 children affected by Epilim exposure to 2000 children affected by Thalidomide exposure)
Since reading the Sunday Times article I have tried to find out as much as I can about FACS. I began by ringing a friend at Manchester University. He told me that genetic diagnosis was much more sophisticated than 30 years ago. With regards to FACS he then referred me to a colleague who is a Geneticist.
I was told that a group of solicitors had begun a class action against the drug giant Sanofi in 2005 which was funded by legal aid. This failed because legal aid was withdrawn a couple of years later with £3m of legal costs expended. She also said it was likely that a similar Class Action would succeed now if it were launched again, because of the weight of evidence now accured.
The only positive reaction from Sanofi to date has been the addition of a mild warning on the instruction sheet that accompanies the Epilim tablets, which has only happened in the last year.
Sanofi’s website now gives:
Sanofi – A diversified healthcare company, focused on patients needs
Which leads to: Our Products
And then to : Medicine Names
And then to : E
And then to: (at least 15 varieties of Epilim)
Clicking on the 1st Epilim variety on the list gives the link: View Information Leaflet
This reveals advice in Bold Type
PREGNANCY AND BREAST- FEEDING WOMEN WHO BECOME PREGNANT – YOU SHOULD NOT TAKE THIS MEDICINE IF YOU ARE PREGNANT OR A WOMEN(SIC) OF CHILD-BEARING AGE UNLESS EXPLICITLY ADVISED BY YOUR DOCTOR
It then goes on to say, in normal type:
“SOME BABIES BORN TO MOTHERS WHO TOOK EPILIM CRUSHABLE DURING PREGNANCY MAY DEVELOP LESS QUICKLY THAN NORMAL OR HAVE AUTISTIC DISORDERS. THESE CHILDREN MAY REQUIRE ADDITIONAL EDUCATIONAL SUPPORT”
An additional statement says:
“It is very important that you discuss your treatment with your doctor well before you become pregnant”
These deadpan words belie the culpability of Sanofi in promoting such an evidently flawed drug for 40 years! It is no doubt true that Epilim has been used most effectively in a variety of situations, but at what cost? It has also created carnage in its wake. Sanofi must be brought to account, and if experts still deem that Epilim should be used in certain treatments the most stringent of rules must be put in place to prevent further catastrophic use by women of childbearing age!
At the end of January 2013 a new medical paper was published in the Journal of Neurology, Psychiatry and Neurosurgery regarding a 6 year study, in which it stated that Valproate and other anti convulsant medications, when taken during pregnancy, cause neurodevelopmental and autistic spectrum problems in a very significant proportion of babies born in such circumstances.
Please support the campaign of the pressure group the Independant Fetal Anti Convulsant Trust (In-FACT) by signing EDM 1021.
This EDM is a very important part of a conccerted attempt to raise the profile of FACS Syndrome, similar to the raising of the profile of autism in the late 80’s by events such as the film Rain Man.
For any further information you could contact Janet Williams or Emma Murphy, Co-founders of In-FACT on 01253 799161