Fetal Valproate Syndrome

 By Emma Friedmann

Following a research paper published online 31/01/13 by Dr Rebecca Bromley and team  there is renewed hope that awareness surrounding the medication Sodium Valproate (DEPAKOTE, EPILIM) will be raised.

My Son has Fetal Valproate Syndrome and is disabled for life.  His symptoms include Autism, Dyspraxia, Speech impediment, facial characteristics and global developmental delay.  Some children are born with deformities, Spina Bifida, congenital heart defects and facial characteristics. 

Other symptoms are picked up later http://www.oacs-uk.co.uk/index.php?section=15 . 

Anyone who has these symptoms and whose mother took Sodium Valproate EPILIM may have Fetal Anti Convulsant Syndrome.

I have just become a Trustee of the Fetal Anti Convulsant Trust www.fact-uk.co.uk.  Due to recent structural change please email me emma@emmafriedmann.com. 

OACS are there to support people with Fetal Anti Convulsant Syndrome, their parents and their Carers.

Parents, Carers and people who think they may have been affected can contact the Organisation for Anti Convulsant Syndrome www.oacs-uk.co.uk or call Steve Pollard 07802 406 460. 

You can donate to OACS  http://www.justgiving.com/emma-friedmann or start your own page.

FACT is there to campaign on behalf of people and communities who have been affected by FACS.

FACT aims

1. MHRA need to issue ‘Caution in Use’ safety warnings to all clinicians. They can do this in their monthly safety info email.

2. Press for a public inquiry into why the regulators havn’t issued warnings, why adequate research wasn’t done when alarm bells started ringing.

3. Getting some Corporate Social Responsibility. Getting the public service sector and government to push pharma to contribute to the costs to the state of the services required by people with FACS.

Good visual/audio links are by Lucy Peel - http://www.youtube.com/watch?v=KMrNf0879lM

Press Association video

BBC File on 4 - http://www.bbc.co.uk/programmes/b00xhh70

I am very keen for people in Leicestershire to contact me if they think their child or themselves may have been affected.  Sodium Vaproate is drug used for epilepsy and mental health illness. 

It causes harm to the unborn child if the mother is taking it during pregnancy. 

emma@emmafriedmann.com or 0116 2200486 or 07739 411 373.

DO NOT STOP TAKING SODIUM VALPROATE IF YOU ARE PREGNANT – GO AND SEE YOUR GP FOR ADVICE

I am keen to get the message across to people in the BME communities.  There are children and adults in Leicestershire with the condition who may not have been formally diagnosed.  I want to meet these people and listen to their stories.

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