Emma Murphy from Manchester UK, co-founded FACSA ( Fetal Anti Convulsant Syndrome Association) in November this year with Janet Williams. This is a support group for families affected by FACS. Both women have children who are affected by Fetal Anti Convulsant Syndrom.
The National Autistic Society (NAS) describes FACS on their website as:
‘Fetal anti-convulsant syndrome (FACS) can occur when a mother has to take epilepsy medications (anti-convulsants) during pregnancy. A child with FACS may have a delay in developing speech and language or may have difficulties with social interaction, memory and attention. Some may also have other conditions, such as spina bifida. A number of children with FACS also have a diagnosis of autism.’ NAS website
Emma has five children under the age of 9 and they all have FACS. Their symptoms include, Cerebral Palsy, sever valgus foot, hypermobility, deafness, incontinence, asthma and noise intolerance. They are all on the Autistic spectrum. Emma took Epilim (sodium valproate) which is an anti convulsant drug during all of her pregnancies. Emma was not warned about the dangers of taking Epilim during all 5 pregnancies and the side effects that the drug could have on the developing foetus.
“Unbelievably not one health professional warned of the dangers Epilim would have on the baby. That happened throughout all my pregnancies. You just can’t believe in this day and age that would happen and it is also why I’m so passionate about this campaign.”
Emma was asked what a ‘typical day’ is like in her household
“Each day is totally different with lots of different appointments to attend. The children all attend mainstream school. I’m still having seizures throughout the day so dependent on how severe the seizure has been determines the rest of the day. At the moment each 2nd week is spent at Parliament or meetings that are in the diary that need attending.”
Autism Daily Newscast asked Emma why she decided to start the INFACTS (Independent Fetal Anti Convulsant Syndrome Association) campaign and how she hoped to raise awareness about the condition and to inform women about the dangers of taking Epilim while pregnant.
“The campaign started from Twitter. I had never heard of this condition before and it seemed any health care professionals I spoke to including GPs and Health Visitors were not aware about it either and if they did thy had very little knowledge.”
“I wanted to see if there were any mums out there with this same condition and to spread the awareness. I then started my blog to talk about the condition sharing the day to day lives with my children. The more people that read my blog, the more ladies were coming forward and saying that they were on Epilim or the other 9 Anti Convulsants during their pregnancy and had not been told about it. The more ladies that came forward the more I wanted to carry the awareness on.”
In November this year Emma decided to focus more on making MPs aware, via the INFACTS campaign, about the risks associated with Epilem and pregnancy and to ask the question of why this drug had been prescribed to pregnant women even though the drug company knew it was teratogenic.
Emma States that:
“In 1973 when it was marketed the Department of Health never issued warnings, never reviewed this medicine, the list of faults is endless.”
Emma told Autism Daily Newscast that INFACT was set up In November 2012 and that within 1 year amazing results were achieved. These include among many gaining support from the Thalidomide Campaign Team, meeting with the Epilepsy Society working towards information input, setting up 3 Early Day Motions (EDM’s), becoming stakeholders in the National Institute of Clinical Excellence (NICE) and appearing on Panorama which can be viewed here
On August 16 Emma met with MHRA (Medicines and Healthcare Regulatory Agency) which is a governing body that regulates medicines by ‘ensuring they work and are acceptably safe’. (mhra.gov.uk)
Emma told us that:
“At the meeting Dr June Raines confirmed that approximately 20,000 babies have been affected by Epilim since 1973 but that most importantly that the babies will be born on the Autistic Spectrum. This is absolutely huge news as MHRA/Government has never admitted this”.
“Our figures of 20,000 affected persons are based on Epilim alone. When you bring into account all the other medications it will explain why the rise of Autism has soared. We are very lucky as we can prove that Epilim has caused this condition.”
Emma’s final words are:
“Any ladies reading this do think very carefully if you are being prescribed any of these medicines particularly with regards to depression. Through our campaign we now know that the public ARE NOT being told about the effects of medication on the growing foetus, and I’m not just talking about Anti Convulsant medicines.”
The 3 Early Day Motions are
EDM No 9 – 9th May 2013
EDM No 1021 February 2013
EDM No 385
FACS Association website
You can follow Emma and her campaign over on twitter
You can read Emma’s blog here
You can also follow on Facebook