It is estimated that 1 in around 200,000 people is born with a hypothalamic hamartoma (HH), an epileptogenic lesion attached to the hypothalamus. However, HH syndrome is so rare

I was 7 years old when I first had a seizure in school. My doctors told me that this didn’t always mean that a person had epilepsy, but, after having a cluster of 3 seizures just after lunch one day, I went on to have an EEG and MRI, the results of which led to my doctors diagnosing me with epilepsy. They diagnosed me with a rare form of Reflex epilepsy known as Eating Epilepsy.

I am Javier Peña Ceballos and the epilepsy research nurse at King’s College Hospital. Two weeks ago, I had the pleasure of inviting Luke Stevens to take part in the REGAIN study. Luke had a diagnosis of Rolandic Epilepsy as a child and is now involved in promoting research into childhood epilepsy. Luke attended a research appointment at the National Institute for Health Research/Welcome Trust Clinical Research Facility at King’s College Hospital.

Whilst pregnant with my daughter my life changed drastically in so many ways: during my first trimester, I started having tonic-clonic seizures and was diagnosed with epilepsy.

I have always had a not-so-secret love affair with art: it has saved me during the two major health crises’ over the past few years; from losing my sight and becoming legally blind to then being diagnosed with epilepsy.