About us

My name is Jo Cozens, Chairperson of the Organisation for Anti-Convulsant Syndrome (OACS).

Like many parents, I trusted the medical advice I was given. After being diagnosed with epilepsy at 17, I was prescribed Sodium Valproate and told it would be a lifelong medication. When my husband and I decided to start a family, I sought medical advice about the risks. I was told the chances of harm to my baby were very low.

My son, Tomas, was born in 1999.

As he grew, he faced a series of medical, developmental, and educational challenges. Over the years, our family endured countless hospital appointments, specialist assessments, and operations, searching for answers that never seemed to come.

In 2013, everything changed when I discovered that the medication I had been prescribed during pregnancy could be responsible for many of the difficulties Tomas was experiencing. He was later diagnosed with Foetal Valproate Syndrome and related neurodevelopmental conditions.

The shock was overwhelming. But what shocked me even more was discovering that thousands of other families across the UK were facing the same reality.

That moment changed my life.

I became determined to ensure that no family would have to face this journey alone, and that children affected by anti-convulsant medicines would receive the recognition, support, and services they deserve.

Today, through OACS, I work to raise awareness, support families, campaign for better healthcare and educational provision, and help identify those who may still be living without a diagnosis.

This is more than a role for me—it is a personal mission.

Every family deserves answers. Every child deserves support. And every lesson learned has the power to prevent future harm.

Together, we can make sure these children are seen, heard, and never forgotten.

OACS has been a part of my life for years now, I would have done anything to have an organisation like OACS in Ireland at the time of my children's diagnoses of FACS this was not to be at the time.

There wasn't anyone in Ireland at that time who understood what (FACS) Foetal Anti-Convulsant Syndrome / Foetal Valproate Syndrome was, at the start and neither did I.

I didn't know about all the health conditions connected with FACS due to its complexity. I started down the road of feeling very alone but extremely determined. My personal experience led me to start up a support group for families affected by the condition in Ireland. This is where I am today, OACS Ireland & OACS UK hope to bring support to those who may need it.

It's my opinion the Department of Health needs to act urgently, to prevent more children from being born with, the severe physical and developmental disabilities associated with FACS. Families also need to have adequate support in place for those already with the condition.

Being given a diagnosis of an illness or disorder that is classed as rare, means that both you and your doctor may know very little about FACS. Having a child with FACS can cause distress and feelings of isolation for some but can also be empowering, together we are stronger. Whilst we try hard not to focus on names and labels, it's vital to help each other and connect with like minded people going through similar circumstances.

With rare disorders, it can be more of a challenge to find out information, spreading the word about epilepsy medications harming thousands of children across the world will be a start.

People who are taking Epilepsy medication, need to have informed choice at childbearing age. It's time the health regulators across the world make the right steps, to ensure the right message is being given by health care professionals to women of childbearing age.

Everyone must stand up and take notice of the rare disease community because there are so few of us, to date there are over 7,000 known rare diseases in the world.

OACS Ireland and the UK are here to support anyone who would like to know more, please feel free to contact us.

Hi, my name is Carol and I was diagnosed with epilepsy when I was 17 years old even though I had actually been having symptoms from the age of 14, possibly younger. My GP dismissed my symptoms as stress due to studies and exams at school. I didn't have a tonic clonic seizure until my first day of work fortunately my new employer was very understanding and I kept my job. I was immediately prescribed Sodium Valproate and the strength was continuously increased. I fell pregnant when I was 18 and gave birth to my beautiful daughter Nicola when I was 19. I was given no warning of any risks prior to my pregnancy. My GP reassured me and referred me back to the neurologist who I didn't see until I was very far into the pregnancy and he also reassured me. He explained that there was only a small risk of spina bifida or cleft palate and as my scan was normal I had nothing to worry about.

When I gave birth to Nicola it was very obvious to me despite my lack of experience that there was something very wrong. No one believed me and it took 6 months for someone to actually listen. When Nicola was 3yrs old I became a single parent and continued to raise her on my own. I was unable to work and my epilepsy became worse so my medication was increased. There was no talk of trying a different medication.

Nicola was late reaching all her milestones and attended special needs school and went on to attend a special needs college where she tried to develop independence. With each passing term Nicola became more confident but unfortunately she still needs a lot of support.

I went to college and studied counselling but was unable to go further due to the cost. I also volunteered with the elderly, young people and ran a support group at the special needs school my daughter attended. I later volunteered for the Citizens Advice Bureau where I worked for a few years. I met and married my husband when Nicola was 16yrs old. 13yrs ago I found employment at a local GP Surgery as a receptionist and am now the secretary.

There were many heart-breaking times when I struggled to get access to the services my daughter needed and there still are. It is an ongoing battle fighting her corner but I am very determined. There are times when I feel like giving up but one look at Nicola and I am ready to fight again.

Nicola is now 32yrs old and living in a residential home with other adults with learning difficulties. She is unable to work due to her disabilities and has 24 hour supervision. She struggles every day with things that we find second nature and does it with a smile. She is an inspiration as are all our children.