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Sunday, 22 January 2012

FACS - Educate yourself with the 'Fac(t)s' about FACS. Pregnancy & Medication

This is a guest post blog by Emma. She has a personal and difficult story to tell.

As my first blog to be honest I don’t no what I’m doing. As me and my family deal with the effects of FACS SYNDROME I’m taking you on my adventure. FACS is caused when an Epileptic mum to be is obviously taking her medication to control her seizures, being great for the mum but has a devastating effect on the foetus. I had never heard of this condition until I was pregnant with my 4th child Erin. Being a nursery nurse and now a mum I always knew something wasn’t right with my babies’ as they weren’t progressing the way they should have been, nor were they reaching milestones. My mum had died very suddenly whilst I was pregnant with my 1st baby. She was 40 and died of breast cancer. This was a complete and huge shock and to this day I will never get over losing her. I was diagnosed with depression as my world crumbled. As the kiddies were getting bigger there was always something niggling at me. As Id been diagnosed with depression everyone was always telling me "Emma, you’ve got depression stop being paranoid the Kids are fine." I knew they weren’t. I was adamant and banged on about this, causing many arguments with my fiancée, family and friends. I got a call one day from my sister urging me to turn on Granada Reports. There was a lady on the TV appealing for women who had taken "Sodium Valproate- Epilim” to come forward as this could cause FACS Syndrome, she listed the symptoms and seeing that article on the news was like a light switching on and to this day has saved our lives. At that point I turned to my fiancée saying, "The kids have this." That is where were up to now.

All 5 of my children have been diagnosed with FACS SYNDROME and the symptoms we as a family deal with every day are: -

Cerebral Palsy, Severe Laxed Ligaments (hypermobility) Valgus foot, Asthma, Incontinence, Autism, Asperger’s Syndrome, Noise Intolerance, Facial Dysmorphia and many other symptoms.
I no you’re asking yourself "WELL WHY DID SHE HAVE SO MANY CHILDREN????" Quite simply I was never told of this condition throughout my pregnancies. I attended all anti-natal appointments with my fiancée and Doctor appointments. Never once ever was this mentioned. I was always advised to continue with my medication as it was controlling seizures relatively well and to increase my Folic Acid. THIS IS WHY I AM SO KEEN TO RAISE AWARENESS OF FACS. WOMEN OUT THERE ARE IN THE SAME CONDITION. FACS SYNDROME is now on the rise as all Epileptic Medicines such as:

• Epilim (Sodium Valproate)
• Carbamazepine and
• Tegretol

are being prescribed for DEPRESSION, MOOD SWINGS, PAIN RELIEF, ADHD, BIPOLAR AND AMAZINGLY MIGRAINE. Should this be allowed to continue???? No it should NOT. The Government is fully aware of this. As Trustee for OACS Charity and FACT Trust, our aim is to provide as much help and support to children with this condition and to educate the public about this. We have already taken it to Downing Street, (See picture). If it takes me highlighting my families’ difficulties and struggles to get the condition recognised then as a mum this is what I have to do. This is the journey my family and I are on.

Twitter: Emma4oacs

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  1. Thank you for sharing your story. I'm hoping that you can reach more women and educate them about the negative effects of these prescribed medications.

  2. Wow Emma, what a heartbreaking story. You are very brave to share and to use your experience to educate others about this. Good luck to you and your beautiful children! Deirdre x

  3. Thank you so very much Emma for posting your article on my site. It is so very helpful for you to share your story with others.