A mother and father are campaigning to raise awareness of a rare condition that their little girl has been diagnosed with. Carrie and Adam Podmore’s daughter, Penny, has up to 40 seizures per day due to the condition.
Their four-year-old daughter suffers from Dravet Syndrome, which is a rare, life-limiting form of epilepsy. June is officially Dravet Syndrome awareness month as the condition affects around one in every 15,000 live births, Yorkshire Live reports. On average she can have one seizure every 36 minutes.
It causes individuals to have seizures day and night and has a higher risk of death than other forms of epilepsy. Dravet Syndrome is one of the most common forms of genetic epilepsy and is also the most treatment resistant.
Penny was diagnosed at 20 months old after a number of rushes to hospital in an ambulance. Carrie said: “I found Dravet by Googling Penny’s symptoms and seizure pattern. I was so sure that was what she had that I repeatedly brought it up with her consultant. They said it could be lots of things which were less rare, and she was tested for those first. But after a while, they suggested that she be tested for Dravet.
“The results came back nine months later, but in the meantime, the consultant was 99% sure that it was Dravet and had been treating Penny as though it were Dravet, so we were fortunate in that respect.”
Epilepsy is only one of the many symptoms of Dravet Syndrome, it can also cause learning disabilities and a number of other associated conditions. One element of the disease which is particularly challenging is the lack of awareness, according to Carrie.
She said: “One of the problems we constantly encounter is lack of knowledge of Dravet Syndrome, for example in A&E and among paramedics. In an emergency, you call for an ambulance and explain that she has Dravet and then you have to explain more about what it is.
“We’ve been in the situation where Penny is being blue lighted to hospital and the paramedics have literally been googling it in the ambulance on the way to the hospital.
“Raising awareness is so important as it can be so lonely and difficult when people don’t have any clue as to what Penny has and how it affects her. They don’t understand the severity of Dravet or the urgent nature of dealing with a seizure, especially if it is prolonged.
“People just think the seizures resolve themselves, but Penny was in ICU on numerous occasions in the early days. If more people knew about Dravet, it would make the world of difference to families like ours.”
Early signs of the syndrome include prolonged seizures often caused by fever in infancy. If you think your child may have Dravet Syndrome you should contact your GP or epilepsy consultant and ask for a genetic test. Dravet Syndrome UK is a charity which can help with advice and support if you need it.
