This week’s blog post is from Dr Anne Coxon, ERUK Trustee and former Scientific Advisory Committee member. Dr Coxon’s daughter Katherine, has a diagnosis of Lennox-Gastaut Syndrome, a severe form of epilepsy. In this piece, Anne shares their story and the role research has played along the way.
Our daughter, Katherine, celebrated her 32nd birthday this month. Twenty years ago, I would not have dreamt that she would live this long.
I remember her 18th birthday party, and one of the nurses at her specialist boarding school told me she too had not thought she would see Katherine reach 18 (two of her seven classmates died of SUDEP – sudden unexplained death in epilepsy). Katherine has a diagnosis of Lennox-Gastaut Syndrome, meaning that she has multiple seizure types that are resistant to treatment and she has severe cognitive, communication, emotional and behavioural difficulties – she is dependent on other people to keep her safe.
The fact that Katherine is now 32 is undoubtedly due to research into the causes and treatment of epilepsy, as well as the round-the-clock care she is given in both her specialist residential placement, and when at home. As parents, we have never accepted that Katherine’s epilepsy could not be improved, and we were lucky to have a paediatric consultant who involved Katherine in early research, whether novel medication, the ketogenic diet, neuropsychological assessments, psychiatric referrals or sleep studies. While there was often only temporary improvement with drug changes (and the ketogenic diet gave only a week’s respite from seizures), we were always grateful that there were clinicians and researchers still trying to improve the lives of children like Katherine, and of course, fundraisers willing to contribute.
Katherine is now an adult but lacks mental capacity, and as her parents, we are still having regular conversations with health professionals about treatments for seizures, behaviour and mood. Sometimes it is difficult to weigh up whether to trial a new drug or decrease an existing medication in case an improvement in seizure control is offset by a deterioration in behaviour or cognition– and having a research evidence base is helpful.
We remain committed to finding a balance that would enable Katherine to lead a life that she finds fulfilling and interesting. She loves her family and pets, enjoys Disney films, develops affectionate relationships with her carers and her peers. However, COVID-19 has had a huge impact on the community of people with epilepsy that she lives with – residents are confined to their individual bungalows and the activities they used to enjoy have been cancelled. Family visits are restricted and Katherine has not been allowed home since before lockdown began – the biopsychosocial consequences of this isolation are already evident. We celebrated her birthday this year with a picnic on the sports ground, and Katherine saw her sister for the first time in five months.
We are pleased that ERUK researchers not only investigate the causes of epilepsy and the mechanisms of potential treatments, but also that many are interested in how people with complex epilepsy and their families can have a better quality of life. Recent funded studies have looked at how to minimise the risks of SUDEP, how to support the siblings of people with epilepsy and how to manage sleep disorders. ERUK-funded researchers are also being responsive to the urgent needs created by COVID-19 – Dr Charlotte Tye is examining the effects of the pandemic on children with epilepsy, and her findings will help inform how best to support vulnerable adults too.
As an organisation, ERUK improves the lives of people with epilepsy and their families by coordinating the researchers and funding. By championing accessible research information through the Research Blog and lay summaries of the research they fund, and by inviting people who live with epilepsy to join its Scientific Advisory Committee and Board of Trustees. This is only possible because of donations from people who understand how damaging epilepsy can be, and ERUK is committed to expanding that understanding to the wider public. As a family, we have often needed to explain to other people how epilepsy has affected Katherine, why she requires such a high level of care, and why her behaviour can be unpredictable. The ERUK website provides resources that help can keep families and friends stay informed about the condition, and signposts to the practical resources of other epilepsy charities.
It is not enough to be kind and compassionate to people with epilepsy – society should find it unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures. Research into epilepsy, and ERUK in particular, gives us hope that our daughter Katherine may one day have a life without seizures, and until then, we take comfort that there are people dedicated to making a better life for people who live with epilepsy.
-Dr Anne Coxon