My Newspaper Feature – FACS SYNDROME


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Knowing and living with the fact that a prescription drug described by my GP, has affected the health
of my 5 children is something I will always have to accept and live with.

The Government seem to focus on the dangers of smoking, alcohol and recreational drugs in
pregnancy. What about prescription drugs? Prescription drugs are not a choice for ladies in
pregnancy, they are prescribed for a reason whatever it maybe. Its all well and good focusing on
smmoking, alcohol and recreational drugs, awareness wise it is a good thing, however they are a
choice. A conscious choice the lady has taken upon herself, prescribed drugs are not.

I was prescribed the drug Epilim aged 12 after being diagnosed with Epilepsy. For people with
Epilepsy, Depression, Bipolar, Migraine, Pain Relief etc Epilim is one of the best drugs to control
these conditions. However the effect is has on the unborn baby is a different matter. A medicinal
drug I was prescribed and at no point throughout my pregnancies was I warned of the dangers of
what Epilim could do. An action in todays era is shocking. This is a position ladies up and down the
country are facing and have done since Epilim was introduced onto the market in 1973.

Back in 2005 the MMr scandal caused huge controversy as it was THOUGHT that having the MMR
injection to babies MAY cause Autism. Last week a medical journal was published categorically
stating that if a baby is exposed to Epilim during pregnancy it will cause “Neurodevelpomental
Disorders”. Figures from our medical team that 48,000 children have been exposed to Epilim and
40% of those children will have both physical and cognitive long term conditions. This will result in
the child then being diagnosed with FACS Syndrome, and other conditions associated with it.a

Use of the drug?

With regards to my care during my pregnancys about my Epilepsy, questions would be asked as to
how I was with my epilepsy? Was I having seizures? However at no point throughout consultations
was I advised about the affect Epilim could do. This would be discussed with midwife, anti natel
consultant and the advice given back was always to continue with the dose of Epilim and to increase
my dosage of Folic Acid. This was advice given by fully qualified GPs, Midwives and Consultants who
have studied all areas of their field….who am I to question advice given. I had full trust in them,
after all they are the professionals.

How did I feel when I realised it was Epilim??

Call it a mothers intuition, the older the children were getting I always knew deep down something
wasnt right. Comments were always made as to their faces…. there eyes looked chinese or there
cute button nose, something that really annoyed me. This I know now is a symptom of FACS – Facial
Dysmorphic Feature. Developmentally they were always late in reaching milestones particularly
when it came to speech. During this time I had been diagnosed with depression and whenever I
would bring up the fact something didnt seem right, it was a case of “Emma you have depression,
theres nothing wrong” Making me feel as though I was a neurotic mum imagining things. Constant
crying all day wih the babies, taking them too hospital to see why they were crying so much….”Its
just Colic” Raising my concerns with health visitors, the babies getting frustrated and banging there
heads off the floor in Tantrums “Its the terrible two’s” Constantly getting brushed off. Finding out
it was actually the Epilim, was a mixture of both relief – I knew I wasnt going mad or imagining it but
complete devastation knowing I had taken the medication and it had caused these difficulties with
my children.

Awareness

Awareness within the medical world needs to be highlighted more. Taking the children to
appointments to find that most clinicians are not actually aware of FACS SYNDROME is still to this
day very annoying. On every appointment with the children we would always bring a very basic
booklet for the Dr to look at explaining what this condition was. It was like Groundhog day on every
appointment. When a Dr is asking you the parent what the medical condition is, frustration is not
the word. If Drs were not aware of this, would ladies on this drug be?? With that I decided to use
the social network site Twitter to try and raise awareness and to see if any other parents were facing
the same thing. I then decided to talk more about it, and formed my blog, just talking about the
children, posting pictures and my thoughts Amazed by the response I had and finding that still to
this day ladies are not aware of the effects Epilim is having on their babies, a very scarey thought.

Each year the drug company who make Epilim, profit continuously. In 2011 they made 388 MILLION
euros by this one drug. They are totally aware of the effects Epilim has on babies as they have paid
for various studies to be carried out. I fully understand that they are a business and it all comes
down to money but how can they seriously allow this drug to affect babies in such a devastating
way. Under the FACS Syndrome umberella approximately 5000 babies are born each year. Why
should it be the taxpayer paying for the care of these children it should be the drug company. As a
trust our next step is to carry on raising awareness within Government. Our EDM (Early Day Motion)
has just been accepted so this will back up and strengthen our case to hopefully get the Public
Enquiry that is needed, to stop this continuous rise in affected babies.

Make It Count

Make It Count

TWITTER : Emma4facs

WEBSITE: http://www.facsa.org.uk

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2 thoughts on “My Newspaper Feature – FACS SYNDROME

  1. Pingback: My Newspaper Feature – FACS SYNDROME | Emma4facs

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