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A parent shares a heartfelt and honest look at life after getting a tough diagnosis for a child. It talks about the initial shock and the journey to finding a new normal. It highlights the importance of building a supportive community, adjusting to new routines, and trusting medical professionals. Discover the emotional ups and downs of getting unsolicited advice and comparisons from others.
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Receiving a diagnosis of epilepsy can come as a shock, leaving families feeling frightened, lonely and overwhelmed. Children and young people need help and support understanding their new diagnosis and how it will impact their lives. Help provide the support children need when they need it most.
Young Epilepsy is an official charity partner of the country’s largest family fundraising festival – CarFest!
We’re teaming up with Geek Retreat to create an inclusive gaming space for young people with epilepsy.
A special shout out to the incredible Fliss who completed the 26 miles in 26 days challenge as part of our Purple Day celebrations. Fliss was our top fundraiser for the challenge, raising £1,200. Read her story here.
SUDEP Action and Cornwall Partnership NHS Foundation Trust are collaborating with Young Epilepsy to create a paediatric version of the SUDEP and Seizure Safety Checklist. The award-winning Checklist, which launched in 2015, supports health professionals in discussing epilepsy mortality risks and SUDEP (Sudden Unexpected Death in Epilepsy) with their patients (aged 16+).
Young Epilepsy is joining with other organisations from the epilepsy community to call for a review of proposals that could have an impact on access to the anti-seizure medication valproate.
Epilepsy Medications in Pregnancy Survey Report
We found worrying disparities across the UK in school policies and support for young people living with epilepsy after over 1,000 families from across the country responded anonymously to our survey about the support they received at school during the 2021/22 academic year.
Learn about Annie's experiences with epilepsy, sharing insights into her daily life, challenges, and personal growth.
The medicines regulator (MHRA) has announced further changes to prescribing the epilepsy medication valproate which are due to be introduced over the coming months.
Young Epilepsy is one of several epilepsy charities that has been targeted on Twitter by individuals posting flashing images in an attempt to induce seizures. Epilepsy Society have led the ‘Zach’s Law’ campaign for greater protection online for people with epilepsy. The campaign was named after one of their young supporters who was targeted on social media.
