Karen Keely, OACS Trustee & Irish Liasion Officer
My Name is Karen Keely
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 Anticonvulsant 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 child baring 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 child baring 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 more, please feel free to contact us
Organisation Anti-Convulsant Syndrome. (OACS) Ireland