Unfortunately, there are still many cases where epilepsy is undiagnosed. Most recently, earlier this month there was a high profile case where 29-year-old actor, Amii Lowndes, who has appeared in Doctor Who and Skins, died from undiagnosed epilepsy. Amii’s death was caused by sudden unexpected death in epilepsy (SUDEP).
Back in 2019, actor Cameron Boyce also died of SUDEP, although in his case his epilepsy had been diagnosed, a stark contrast to Amii’s case, which perfectly highlights the need for better awareness of epilepsy.
Amii had previously experienced two seizures, one in 2018 and one in May 2020, which was just weeks before her death in June. Despite this, she had not been diagnosed with epilepsy and as such had not embarked on any treatment path. Before her death, she had been told that her seizures were most likely linked with a heart condition during a telephone consultation with a neurologist, ruling out epilepsy.
During an inquest, Professor David Chadwick attested that her death was “unlikely” to be as a result of lack of treatment. However, campaigners have argued that 42% of SUDEP deaths could be prevented with better information, faster diagnosis and treatment. Ultimately, the case was adjudged that Amii’s death was not the result of medical negligence.
Although no ruling of medical negligence was found, it’s a stark reminder that although epilepsy affects around 65 million people worldwide, there is still much that needs to be done to improve understanding, both from the public and the medical community.
The question is, how does epilepsy go undiagnosed? A question with a number of answers, unfortunately. Epilepsy is extremely varied and the severity and frequency of symptoms are wide ranging from person to person.
In those individuals where symptoms are more subtle, they can often be missed or confused for other conditions, as is the case with Amii.
As mentioned, there are many other conditions that are known to be ‘imitators of epilepsy’, which can often lead to a misdiagnosis. These include, but are not limited to:
As cases can vary so much, it’s difficult to say what would happen if epilepsy is undiagnosed, although the most significant scenario is highlighted in Amii’s own story. Without diagnosis there will be no treatment, which can lead to repeated, uncontrolled seizures and SUDEP.
If you think that you might have undiagnosed epilepsy or show symptoms of epilepsy, the first action is to engage with healthcare professional (HCP) and seek a diagnosis.
It may be worth keeping a detailed diary of symptoms, in particular any seizure activity. This can help a HCP to make a more accurate diagnosis.
National Epilepsy Training can help
If you think you have undiagnosed epilepsy and want more information, please contact us on 01706 373075 or email firstname.lastname@example.org.