Where are the celebrities with epilepsy?

So, Kelly Osbourne is recovering in hospital after having a seizure while filming her TV fashion show. She probably feels pretty dreadful right now – I’m guessing headaches, memory loss, aches and pains and fatigue for starters – and I wish her a swift recovery and a swift diagnosis.

Her seizure could have any one of a number of different causes, but if she is diagnosed with epilepsy, I hope she will speak out about it.

Can you name any famous people with epilepsy? You might say Julius Caesar and Alexander the Great, and even Vincent Van Gogh or Joan of Arc if pushed.

But can you name any contemporary famous people with epilepsy? Without any help from Google, the only people I could think of were Olympian Dai Greene and actor Rik Mayall. Google also gave me actor Hugo Weaving and DJ Edith Bowman.

My Googling also brought me to Epilepsy.com’s list of famous people with epilepsy, but even that site somewhat mournfully admits:

Today, celebrities with epilepsy remain “in the closet,” concerned that going public with their epilepsy will result in negative treatment and harm their employment opportunities. This is a shame, because people living with epilepsy – people who are neither geniuses nor celebrities – deserve to have role models to inspire them, and leaders to raise public awareness and understanding of their disorder.

There is no denying that we live in a celebrity-obsessed world (heck, Heat magazine is my guilty pleasure) so just think of how much of the thousands of years of stigma could be destroyed if a big name star spoke out. Think Michael J Fox and Parkinson’s, or Kylie Minogue and breast cancer, or Stephen Fry and bipolar disorder. Their openness has done so much to raise awareness. One in every 131 people in the UK alone has epilepsy, so there must be some household names out there.

I have never personally suffered any major instances of prejudice (lack of understanding and even embarrassment are the most common reactions, which I am always happy to address) but you regularly see inaccurate and unhelpful things written in the media.

People with epilepsy can be just as successful as anyone else. We don’t have to be ashamed. So if Kelly Osbourne does end up joining us, I hope she will feel able to talk about it when she’s ready. It would be great to see epilepsy discussed in a more positive way that can inspire us all.

Feature: My Journal (epilepsy and pregnancy) – Epilepsy Today magazine

I wrote this feature as part of Epilepsy Action’s HealthE mum-to-be campaign and I truly hope that my experience will reassure women with epilepsy that they can go on to have healthy pregnancies and healthy babies.

This article was first published in Epilepsy Today, March 2013 (copyright Epilepsy Action 2013). Epilepsy Action exists to improve the lives of everyone affected by epilepsy. For more information, visit www.epilepsy.org.uk

Here is a PDF of the story as it appeared in Epilepsy Today. (complete with photos 🙂 )

Hannah Hiles had always been aware of the potential problems associated with pregnancy and epilepsy – so she was determined to do everything she could to minimise the risks

Babies were the furthest thing from my mind when I was diagnosed with epilepsy. I was 20 years old, in my second year studying Modern Languages at Oxford University. In fact, I was about to move to Germany for a year. No – babies definitely weren’t in the plan.

Still, when I was bluntly told by a young neurologist that I was “at risk of having a deformed baby”, I was horrified. I didn’t hear anything else he said to me that day and I never forgot it.

Many years later, my husband and I decided to try for a baby. I was determined to give our much-wanted little one the best chance of being healthy.

I hadn’t thought about epilepsy for years. Since being diagnosed in 1999, I had been taking 200mg of Tegretol Retard twice a day. (How pleased I was when they renamed it Tegretol Prolonged Release!) Since then, my medication had allowed me to live completely free from symptoms.

Back in 1999, I’d been feeling peculiar for weeks before I knew what was wrong with me. I’d get this strange feeling in my left arm that I’ve never been able to properly describe. “My arm feels like cotton wool,” was one attempt. Even when I moved on from having just a “funny arm” to having a shaky one, I simply carried on with my normal university life.

It was when I came home for the summer that I had a tonic-clonic seizure and was rushed to hospital. They let me come home – but I promptly had another.

It must have been terrifying for my parents, but I can’t remember much from that time. I was in denial and wouldn’t read any of the information I was given. I saw it as a personal failing and was thoroughly affronted. Nothing was going to stop me doing what I’d planned.

Less than two months later, I headed off to Germany to teach English, where I lived on my own in a flat in Erlangen. The following year, I graduated with a 2:1 degree. I got a job as a journalist with the newspaper I had grown up reading in North Staffordshire, The Sentinel.

I went on with my life, taking my tablets twice a day but otherwise untroubled by epilepsy. I had dealt with my diagnosis – or not, as the case may be – simply by not thinking about it.

After marrying my husband Andrew in 2007, we moved to a different town. My new doctor wanted me to see a specialist, as I hadn’t seen anyone since 1999. They were surprised that I’d never been encouraged to come off my tablets. They wanted me to give it a try, particularly as we were hoping to start a family.

Frankly, I was terrified.

I was a dreadful patient, sobbing through my appointments and tests. I found the MRI scan stressful and claustrophobic, and was grouchy about the EEG. All the feelings that I had never faced over the years bubbled over, especially at the loss of my driving licence while I reduced my medication.

I had a wonderfully calming specialist nurse, Phil Tittensor at Cannock Chase District Hospital. He ran through all my options and shared my test results – both were more or less normal.

Despite this, I just couldn’t do it in the end. I was so worried about having a seizure that I couldn’t sleep and not sleeping was making me feel ill. Feeling ill was making me worry that I would have a seizure, and so on. It became a vicious circle.

Phil and I decided that the best option was for me to start taking the tablets again. I was taking a low dose of the safest drug. This would only increase the risk of a major problem with any potential baby by one per cent. Even then, I still felt guilty that I could be putting my baby at risk because of my own fears.

To lessen the risk of spina bifida, I was prescribed extra-strong folic acid. I took five milligrams, compared to the 400 micrograms recommended to women who aren’t taking anti-epileptic drugs. I had to take that for six months before we even started trying to conceive, then throughout my pregnancy.

In December 2010, we finally got that blue line on the pregnancy test. We were over the moon. I started showing quite early so I ended up telling people when I was only about two months pregnant. I was so excited – but always had the words “deformed baby” at the back of my mind. Would my baby have spina bifida or another malformation, such as a cleft palate?

Phil provided me with a lot of reassuring and up-to-date information about mothers-to-be who take anti-epileptic drugs (AEDs). I signed up for the UK Epilepsy and Pregnancy Register to allow my experiences to feed into their research.

I was very conscious that I was receiving excellent support from Phil, but that not all women with epilepsy are so fortunate. I even emailed the author of an otherwise excellent pregnancy book, who stated that carbamazepine was one of the worst AEDs to take while pregnant. (She thanked me and said she would amend it in future editions.)

The ultrasound scans were amazing – the first time I saw my tiny baby on screen was one of the best moments of my life. But I kept asking the sonographers: “Is he moving his legs? Can you see his spine? How is his mouth?”

I was seizure-free and healthy throughout my pregnancy. I never really got that ‘glow’ that people talk about, though. I was enormous – and was always being asked if I was sure I was only having one!

Because of my epilepsy, I was considered a ‘high-risk’ pregnancy (no water birth for me). I saw the consultant obstetrician, who was happy with my health and that of my baby. There were only two adjustments I had to make. I had to have regular blood tests during pregnancy [this is not the case for all women with epilepsy]. I also had to avoid using pethidine to relieve pain during labour. My birth plan consisted of just the following three points.

  • I would prefer not to have continuous monitoring.
  • I want no pethidine under any circumstances.
  • Andrew does not want to cut the cord.

As it turned out, I would be extremely glad that I was ‘forced’ to have the continuous ‘high-risk’ monitoring that I didn’t want.

My due date came and went. I began to feel like I was never actually going to give birth. I went for walks, ate curries and pineapple, and bounced on my birthing ball – all to no avail.

I finally went into labour 11 long days after my due date. Thanks to the monitoring equipment, medical staff quickly realised that the cord was around my baby’s neck. Every time I had a contraction his heart rate was dropping.

When this became more serious, they rushed me in to surgery for an emergency Caesarean. Just 10 minutes later Alex was delivered on his Daddy’s birthday in August 2011. He was in perfect health, weighing 8lb 8.5oz. We couldn’t believe that he was finally with us – and with no spina bifida, cleft palate, or any other abnormality at all. We would have loved him no matter what, of course – but the relief was indescribable.

My husband and I had no real experience of babies, so looking after Alex was a steep (but wonderful) learning curve. I am still breastfeeding him 17 months on. I was never concerned about passing the medication through my milk – he had already been exposed to it for months in the womb. Even the inevitable lack of sleep that comes with a new baby didn’t have any effect on my epilepsy.

Having Alex is a dream come true. He brings so much light into our lives. Every day it is exciting to see what else he can do. He loves toddling about and shouting “hello” to everyone he sees.

One unexpected plus is that I no longer have those negative feelings about having epilepsy. I wanted to give my much longed-for baby the best possible start. That forced me to face epilepsy head-on – which finally enabled me to come to terms with my diagnosis.

Editor’s note: carbamazepine is actually one of the better epilepsy drugs to take during pregnancy. Although all AEDs carry some risk, the risk attached to carbamazepine is very low. In the general population, between one and two babies in every hundred might be born with a malformation. In a woman taking carbamazepine, that risk is increased to 2.4 per cent – between three and four babies in every hundred.

My complaint to the Daily Mail about their coverage of epilepsy

As a person with epilepsy, one of my major bugbears is the way the condition is treated in the media, especially the tendency to equate it with mental illness.

A recent article in the Daily Mail Epileptic man stabbed his noisy neighbour to death with a fish knife in row over  eviction made my blood boil so much that I just had to send the following email of complaint to their letters editor:


I was shocked and saddened to read your report of the man who killed his neighbour over a dispute about noise.

There are two main areas of concern with Emily Allen’s report.

The term “epileptic” is used in the headline and copy as almost a justification for this man’s murderous behaviour, particularly when placed alongside his mental health problems. In fact, his having epilepsy was of no relevance to the story whatsoever.

Epilepsy is not synonymous with mental health problems – it is a neurological condition caused by abnormal electrical impulses in the brain. These are not caused by the chemical imbalances which can be found in mental health conditions.

Relating this man’s violent crime to his epilepsy only serves to reinforce ill-informed prejudices and the unnecessary stigma which people with epilepsy incredibly still face. If he had had asthma, would your headline have been “Asthmatic man stabbed noisy neighbour”?

I was also disappointed by your use of the label “epileptic”. As a person with epilepsy, I refuse to be defined by the condition. It’s just a very small part of who I am – I am not “an epileptic”.

In the same way that you would surely not refer to a “Downs Syndrome baby” in this day and age, it would be fantastic if people with epilepsy could be granted the same respect.

I didn’t get a reply, but then I didn’t really expect to. I just had to do something to let them know that what they had written was unacceptable. If it makes them think twice in future, all the better.

Sending that email also prompted me to take some more positive action by signing up as a media volunteer with Epilepsy Action. It would be an honour to be involved in something which would encourage and reassure women with epilepsy that they can go on to have the families they dream of.