Organisation for Anti-Convulsant Syndrome
Registered Charity No. 1116497
UK Helpline: 07904 200364
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.