Today is International Epilepsy Day, which is the chance to raise greater awareness of an often misunderstood condition.
To tell us about how epilepsy has not only affected her life but the lives of her children, Emma is here sharing her story.
It’s important to remember that these details are personal to Emma and her family and My Family, Our Needs would never recommend stopping any medication with seeking advice from a medical professional first.
My epilepsy diagnosis
I was diagnosed with epilepsy at the age of 12. In the months leading up to my diagnosis, I’d been having a series of headaches and fainting attacks but they were often dismissed due to my age. It wasn’t until I had a full ‘Grand Mal’ (now classed as Tonic Clonic) seizure in which I collapsed to the floor unconscious and was violently shaking, that it was taken more seriously. I was rushed to A and E in an ambulance with my Mum and Nana. Epilepsy doesn’t run in my family so for them to witness me having these seizures had quite an impact on them.
I continued to have more violent seizures and was then diagnosed with Generalised Grand Mal Epilepsy. Despite having the headaches and fainting, I never actually knew when a seizure would happen. I would often just wake up in the hospital, having been unconscious, with the most horrific back pain, cuts, bruises, not knowing where I was or who I was with. Even today, that feeling following a seizure is horrendous and a sensation that is hard to deal with.
The first method of treatment for me was with a medication called Lamotrigine, but I reacted with a rash which is a well-known side effect, so was quickly taken off this and prescribed Sodium Valproate.
Being just 12, I was really embarrassed to have this sudden illness. At first, only a few close friends knew I was having seizures as some had witnessed me having them. It was stressed to me and my family by the doctors the importance of taking my medication regularly at the times prescribed.
What worked for me
Valproate was a good medication for me personally because it controlled my seizures. It cut down the frequency and severity in which the seizures presented. However the saddest part of my epilepsy story is not the fact that I have epilepsy and deal with daily absent seizures, but the fact that the medicine I was taking went on to affect my children for life.
Throughout my pregnancies, I was never warned of the possible side-effects of taking Valproate during pregnancy. My husband and I asked the questions that needed to be asked but at no point throughout my consultations was I advised about the possible side-effects of taking Epilim on my unborn babies.
I was told to continue taking it as it was the best medication to control the seizures I was having. GPs, midwives and consultants all advised me to do so. I had complete trust in the medical profession.
Too little, too late
So, I carried on with my pregnancies and I had my babies. But once they were here (call it a mother’s intuition), I soon realised something wasn’t quite right.
People always made comments about their features, in particular their eyes and noses. I now know this to be facial dysmorphic features – a symptom of FACS (Fetal Anti Convulsant Syndrome). Developmentally, they were always late reaching milestones, particularly when it came to their speech and mobility. Symptoms and sometimes diagnoses continued to present with the children and after doing my research, I now know that there is a long list of symptoms associated with FACS, including:
Hitting rock bottom
After my first child was born, I was diagnosed with depression due to the sudden death of my mum and whenever I brought up the fact something didn’t seem right, I was fobbed off and met with the same responses over and over again:
‘Emma you have depression, there’s nothing wrong’.
‘It’s a phase babies go through’
‘It’s the terrible twos, once they reach 3 everything will be fine’
‘You’re being over protective and over cautious’
I was made to feel I was a neurotic mum imagining things. When I raised my concerns with healthcare professionals, I was repeatedly given the brush-off. Yes, I did have depression that was getting worse, however, I had real genuine concerns about my children’s health that nobody was listening to. This was a devastating and traumatic time, not just for me but also for my husband, as we had 5 children under the age of 7, all with physical and mental disabilities. However, this period of time shaped me and made me the person I am today, as I knew things had to change not just for me, but for the other women out there who were being subjected to neglectful and ignorant attitudes and behaviours.
Taking matters into my own hands
When I discovered the link with Epilim and birth defects, I actually felt huge relief. I wasn’t going mad, or imagining things after all. But relief was mixed with sadness and devastation when I realised that had I not taken the drug throughout my pregnancies, the outcome could and would have been so very different. Yet awareness in the medical profession is still worryingly absent.
Following that period, I have since established with my work partner and friend Janet the only active and registered Trust in the UK raising awareness, advocating and supporting babies, children and families with epilepsy and FACS. We also lead the Campaign at Parliament keeping awareness for FACS on the political agenda and to implement change with the prescribing of Epilepsy medicines in Pregnancy. We have had huge successes but more work is needed to be done.
Living with epilepsy is very challenging and no one day is the same, some days are ok and some are terrible. Until you know somebody diagnosed with it, you will never realise the gravity and impact it can have on a person, and for some it can be devastating. I have been very lucky. On this International Epilepsy Day, it is the voice of patients with epilepsy that will educate people and strengthen the awareness of the condition, something that is still desperately needed.
Read more about FACS and follow the awareness day on social media using the hashtags #purpleday #EpilepsyAwarenessDay and #Epilepsy. You can also find out more about Emma and her campaign at @Emma4facs