OACS IRELAND

OACS Ireland is a voluntary group, we are dedicated to providing support, help, and advice to other families, whose children have been affected by Foetal Anti-Convulsant Syndrome (F.A.C.S) in Ireland.

OACS - Who Are We?

OACS Ireland was a voluntary group that was set up in 2017. OACS Ireland have now received Charity Status, we provide support, help, and advice to other families, whose children have been affected by Foetal Anti-Convulsant Syndrome (F.A.C.S) in Ireland.

Our Mission

The Purpose of OACS Ireland is to ensure that people living with FACS and their families will experience better recognition, improved public health services, and support.

How We Can Help

We are here to support all families impacted by Foetal Anti-Convulsant Syndromes (FACS). Foetal Anti-Convulsant Syndrome is caused when the anti-convulsant medicine a woman takes during pregnancy affects the foetus. It is not yet understood why this affects some children and not others, but it is believed it may be due to a genetic disposition.

Epilim - (Valproate) -Edition of the HPRA Drug Safety Newsletter

Important: Please do NOT STOP taking your medication without speaking to your Health Care Professional.

Our Core Values

Accountability

We take responsibility for using our resources efficiently, achieving measurable results, and being accountable to supporters, partners and, most of all, children.

Collaboration

To enhance the capacities of its members through information, exchange, networking, mutual support, and potentially joint actions.

Respect

To represent its members and people living with a Foetal Anticonvulsant Syndrome at large, throughout Ireland.

Creativity

We are open to new ideas, embrace change, and take disciplined risks to develop sustainable solutions for the organisation.

What is F.A.C.S?

Foetal Anti-Convulsant Syndrome is caused when a mother uses anti-convulsant medication during pregnancy. (also known as Anti-Epileptic Drugs, or AEDs.)  AEDs are not only used to treat epilepsy but are also used to treat pain, migraine, bipolar, mental health and other conditions.

One of the challenges that can occur for the pregnant mother with epilepsy is that some mothers tend to have more severe seizures during pregnancy.  As a result of this, some doctors will up the dosage during the pregnancy which can make the foetus more susceptible to problems during pregnancy.

The risk of disability varies according to the specific drug taken; however, there are some patterns to be seen in all cases. Foetal anticonvulsant syndrome(s) are/is not a 'genetic' condition in the usual sense, but current opinion is that it is in the way these drugs are metabolised by some pregnant women, and/or their affected children, predisposes the unborn baby to damage.

Epilim (Sodium Valproate) has a history of adverse developmental effects. The drug is unusual in that its teratogenicity in humans was predicted from animal studies, without any knowledge of mechanism (Brown et al., 1980; Kao etal., 1981).

. . .

Valproic acid, first marketed in Europe in 1967, appeared to be without adversity to development over the initial 13 years following marketing. Then, in the early 1980s, Dalen’s and her associates made the initial association of VPA to birth defects (Dalen’s et al., 1980; Dalen’s, 1981). They reported an infant who died at 19 days of age, was growth retarded, and who had multiple malformations of the face and brain, heart, and skeleton, among other defects. The mother of the infant had taken 1000 mg/day of VPA throughout gestation. These observations were followed by several case reports and other publications attesting to the malformation effects of the drug when administered to a pregnant mother during gestation.

Some characteristics of  foetal anticonvulsant syndrome involve the following areas: spina bifida; cleft lip and palate; facial and skull; limb defects; ear malformations; skeletal malformation; heart, kidney, urinary tracts, and sexual organ malformations, developmental delay, facial features, low muscle tone, Social Communication Disorder, Autism Spectrum Disorder, Attention deficit hyperactivity disorder (ADHD) Speech and Language, Growth and general health, Joint hypermobility, Genitourinary defects. OACS Ireland will provide a full list of FACS conditions to new our website shortly.

Want to know more?
Find out more about anti-convulsant
medication during pregnancy

News & Resources

-New Government face demands for Independent Inquiry from families impacted by Sodium Valproate (Epilim) in Ireland- -Independent Inquiry in UK recommends State Apology for victims-

July 8, 2020

-New Government face demands for Independent Inquiry from families impacted by Sodium Valproate (Epilim) in Ireland- -Independent Inquiry in UK recommends State Apology for victims-…

Read More
-New Government face demands for Independent Inquiry from families impacted by Sodium Valproate (Epilim) in Ireland- -Independent Inquiry in UK recommends State Apology for victims-

#Firstdonoharm IMMDS UK Review Report – Key Recommendations

July 8, 2020

#Firstdonhoharm Report – Key Recommendations The outcome of a two year inquiry in the UK which investigated how the British Healthcare authorities responded to reports…

Read More
Valproate Pregnancy

Epilepsy Ireland Survey Results on Epilim (Sodium Valproate) and Statement of same

July 3, 2020

From the end of 2019 to the beginning of 2020, Epilepsy Ireland ran a survey aimed at measuring the effectiveness of measures introduced in 2018…

Read More
T-Byrne

May 21, 2020

Epilepsy is So Much More Than Seizures 2020 #MoreThanSeizures  The Testimony of Theresa Byrne     “I was first prescribed Epilim (Sodium Valproate) in 1986…

Read More

The UK MHRA Update on Epilim-Valproate

May 8, 2020

The UK MHRA Regulatory Guidance on the Epilim – Valproate Pregnancy Prevention Program (PREVENT) Temporary advice for management during coronavirus (COVID-19) pandemic.   OACS Ireland welcomes…

Read More
Epilim - (Valproate) -Edition of the HPRA Drug Safety Newsletter

The May Edition of the HPRA Drug Safety Newsletter 

May 6, 2020

The May Edition of the HPRA Drug Safety Newsletter which is a dedicated issue on serious teratogenic risks of Epilim▼- (Valproate) containing medicines.    …

Read More