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Me and my epilepsy

Created:

7 September 2017

Head shot of Deborah facing the camera wearing a light blue top and smiling

Deborah

Deborah and her two daughters all live with disabilities and all care for each other. Here she describes how they push forward together, never allowing epilepsy to beat them.

Hanging on to life

During my first few days of life, I died three times due to a lack of oxygen.  The priest was called and I was given the name Nicola. I was expected to die. Obviously I did not die, so to celebrate my living, I was re-christened Deborah.

Early diagnosis

I was diagnosed with epilepsy from the age of 12. An aunt found me unconscious and blue at the end of a seizure. They think the epilepsy was caused by being starved of oxygen at birth.

My mum says I was never quite right but she could not put her finger on it. There were things in my personality that bothered her. I was very emotional and would go from one extreme to the other. I was always clumsy and a bit dopey. Mum thinks I have always had epilepsy, but undiagnosed. She thinks I was having absence seizures before I had my first tonic clonic seizure.

Failing at school

I wasn't good at anything at school whereas my brother and sisters were. I always wanted to be more like them. I wanted to achieve more but was put in a class for children with learning difficulties. I came out of school with no qualifications. I couldn't be bothered. Even when I left school and took a one-year secretarial course at college, I did really badly.

Living with fog

Initially I was prescribed phenytoin, then at the age of 14 I was put on sodium valproate. That made everything foggy for me. I couldn't think straight but that became the norme. I assumed everyone else was the same. Memories of that period are very unclear. I reacted to life rather than experienced it.

Pregnancy and loss

At 24 I became pregnant but lost my first daughter, Trelissa. I then lost a son, Keverne,  and a second daughter, Jasmine.

When I was expecting my fourth baby, I was taking 5,000mg of sodium valproate a day. Rhonnie was born with two holes in her heart and was diagnosed with fetal valproate syndrome. My fifth child, Branwen was also born with fetal valproate syndrome.

Deborah with her two daughters, Branwen and Rhonnie

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Living with disabilities

Both my daughters have congenital malformations, dysmorphic features, learning difficulties, Asperger's, odd feet and are short sighted. Branwen, 21, has hypotonia which means her nerves are not stimulating her muscles properly. Rhonnie, 23, has hyperextendable joints that pop out all the time. She has asthma and some of her organs don't function properly.

Sign language and seizures

Rhonnie is also deaf. I have learnt sign language so that I can communicate with her. Sadly she can't sign back to me as looking at the signs triggers my seizures. This is because of damage in my brain behind each of my eyes.

Cognitive difficulties

Rhonnie finds the world around her very difficult. She experiences a lot of pain and dizziness. She is taking part in a Prince's Trust back-to-work course which involves team building and boosting qualifications. It really helps if she is happy and busy.

Branwen looks after children with learning difficulties. She is now finding it difficult to write and her memory is appalling. She is losing her cognitive abilities and has chronic migraine. An MRI has shown that she has a malformation in her brain and a pituitary cyst. She is very frightened.

Deborah's two daughters, Branwen and Rhonnie pose together

Frightening as a mum

It is frightening on a daily basis for me as a mum. Over the years my health has deteriorated too and my marriage broke down. We are all disabled and all carers. We have to push forward together. We are going to be assessed as carers but not as disabled people, but at least we will have some support.

The fog lifts

Nine years ago, under my consultant at the National Hospital for Neurology and Neurosurgery, I came off sodium valproate. I am now on lamotrigine and lacosamide. It has made an enormous difference to my life. I have found that I am actually quite intelligent. The fog has lifted and I am able to think differently. I am now self taught and teach adults human biology. I used to have seizures a few times a week, now I only have two to three a month.

Making life better

Best of all, I have been able to be pro-active for my daughters. I don't drive so we have to take public transport, but I have been able to work out better, more logical routes. I have also been able to look at what is available for them and what they can achieve. Rhonnie finds my seizures very stressful but she has now seen a counsellor who has taught her a technique for dealing with stressful situations.

Both girls have done a first aid course. This empowers them to feel in control and takes away a lot of the fear.

Support through OACS

I am now secretary of OACS, the Organisation for Anti-Convulsant Syndrome. We support families affected by this syndrome. I talk to many mums and can't believe the stress that many people with epilepsy live under, without any support.  When you are caring for a family, it is very important not to feel alone. Mums with children with fetal anti-convulsant syndromes are some of life's heroes. No-one wants to believe this can happen today.

Feeling lucky

I think I have been a very lucky person. I would not be me today without my experiences of frequent prejudice. The challenges that come with the form of epilepsy I have, have moulded me. Things may not always be great, but I am not unhappy with me today.

www.oacscharity.org/

More information

Find out more about sodium valproate