Epilepsy Fife

Purple day 💜 post your warror below x

I’ve just had a really lovely meeting with Leanne and Norma from Quarriers charity. They have funding to support families with epilepsy and are looking for ways to best support. They suggested booking a venue such as the Yard for a meet up or even just somewhere to meet for coffee and cake initially to come up with some ideas.

Would anyone be interested in this?

Could any families either comment below or dm the answers to us and I will email over … could be a great resource and maybe give us more of a voice with support etc

Charlene ❤️

https://m.youtube.com/watch?v=hRUj8qI-4YQ

Living with Epilepsy | I Can't Go To School Today | BBC Teach A powerful and beautifully animated documentary that uses the first-person testimony of Summer, a 12 year-old living with epilepsy.Summer explains the differ...

Found this resource that might be useful to any families struggling with sleep issues.

I know all our boys have different issues with sleep.

💜

cerebra.org.uk

Good morning everyone,

Hope everyone is having a good summer and staying safe and healthy.

There have been a few families struggling to get medications supplies, smaller independent pharmacies use a range of suppliers and can usually source medications.

Here to help in anyway we can.

Epilepsy Fife 💜

MEDICINE UPDATE: The Medicines and Healthcare products Regulatory Agency (MHRA) has issued a recall for Lamotrigine Desitin 10mg/ml oral suspension from Desitin Pharma UK Ltd, due to potential inconsistencies in the amount of medicine in each dose provided to patients.

This recall is a precautionary measure. Do not stop taking this treatment as this can cause seizures to start again or happen more often or last longer than before.

For any patients currently taking this medicine, your healthcare professional will contact you in order to arrange alternative treatment.

More information can be found on our website: https://buff.ly/45a61jT

Partners Of People With Epilepsy ‘May Be At Risk Of Post Traumatic Stress Disorder (PTSD)’

A study has highlighted the potentially stressful nature of living with a person who has epilepsy.

Many people who act as unpaid carers experience stress and anxiety, with some even meeting the criteria for post-traumatic stress disorder (PTSD), according to previous research.

Researchers at the University of Southern Denmark carried out a study involving 614 people in order to examine whether living with a person with epilepsy in particular could be traumatic for those fulfilling a caring role.

Participants completed questionnaires so that the researchers could assess their levels of stress and determine whether they had symptoms of PTSD, an anxiety disorder caused by stressful, frightening or distressing events.

Information was also recorded on a range of demographic variables in order to shed light on any predictive risk factors for PTSD.

Publishing their findings in the journal Epilepsy and Behaviour, the study authors revealed that 7.7 per cent of people who shared a home with someone with epilepsy fulfilled the criteria for PTSD.

A further 43.9 per cent of participants had sub-clinical levels of PTSD, meaning they had symptoms associated with the disorder, but not to the extent where they would be diagnosed with it.

The researchers also observed that 9.3 per cent of respondents had clinical or sub-clinical levels of anxiety.

Ditte Norup and Ask Elklit, from the Danish National Centre for Psychotraumatology at the University of Southern Denmark, concluded that people “were at risk of PTSD when living with a patient with epilepsy”. They also revealed a number of factors that appeared to be associated with an increased risk of PTSD among partners, including the frequency and types of seizure medication that the patient was on and their experience of side-effects.

Other risk factors included the severity of a person’s epilepsy and any symptoms of anxiety or depression.

In contrast, people who received plenty of social support to look after their partners tended to be less likely to experience traumatic stress.

Welcome Dee Campbell, if you’re a parent of a child with epilepsy there is also a closed group Maisy’s Mates for further support.

The page has been a little quiet recently, we have all been busy with daily life having a child with epilepsy, whether it be further investigations, more frequent seizures due to illness, new/strange episodes etc etc

Hope everyone is managing without having an allocated epilepsy nurse, we haven’t heard anymore on this front but when we do we will let you know 💜