Latest news with #SUDEP
ITV News
6 days ago
- Health
- ITV News
Parents of boys, 4, living with one of rarest conditions in the world hope for gene therapy cure
ITV Meridian's Stacey Poole has been speaking to two families from the south about their desperate search for a cure for their children's rare genetic condition. Families from our region are in a race against time to try and find a cure for one of the rarest genetic conditions in the world. There are only 3 children in the UK living with CRELD1 and there is currently no cure. The condition causes a huge range of symptoms from seizures, to development delay and heart issues. It was only discovered thanks to the tenacity and desperation of one Hampshire family who reached out via Facebook to try and find answers. What they discovered is now helping families around the world. It has many symptoms, but the seizures are the most debilitating, and some children can have up to 200 of them a day. But it also causes heart issues, developmental and cognitive delay, hearing loss, immature eye development, respiratory issues and immune dysfunction. Adam and Jess Clatworthy's daughter Lola had her first seizure when she was three months old. The family spent the next two years in and out of hospital asking questions that no-one could answer. Multiple tests, including ECGs, EEGs, MRIs and genetic testing, both on the NHS and privately, didn't offer any new information either. Adam reached out to support groups posting a video of Lola having a seizure hoping someone maybe able to help. By pure chance, a mum in Canada responded to his Facebook post because she recognised the seizure symptoms in her own son. Her son had a very rare condition called CRELD1. Jess Clatworthy Without a diagnosis, and with no indication that Lola's condition was genetic, Adam and Jess had a third child, this time a little boy called Alfie. Four days after Alfie was born, Lola passed away in her sleep from SUDEP, a tragic outcome for many children diagnosed with severe epilepsy. Whilst grieving for Lola, they also realised that Alfie, although stronger than his sister, also had the same symptoms. He had his first seizure at three months old. Adam Clatworthy But this time Adam and Jess had more knowledge, and they contacted the family in Canada who had responded to the video of Lola Jess and Adam have set up their own charity - Creld 1 Warriors - to explore repurposing drugs using AI and find a gene therapy. Through their desperate search for answers, the Clatworthy family were brought together with the Powell family. Sophie and Oli Powell's son Angus was diagnosed with CRELD1 at 3 years old, but recently the seizures have become very severe - and earlier this month he was rushed to hospital Despite trying all the medications available - doctors decided the only option was to put Angus into an induced coma. Oli and Sophie, from Chaddleworth, Berkshire, say that their son's development is already significantly delayed and the episodes can take months to recover from. Sophie Powell Though the family are uncertain of what the future holds, uniting with the Clatworthy family has given them support and reassurance. Oli took on the epic challenge of running 7 marathons in 7 days. Oli who served as an Army Officer in the military, raised more than £50,000 towards much-needed research into the condition. Working together on the research the families have already made achievements. Sophie and Oli were able to screen their unborn baby after Jess and Adam ensured Creld 1 is now a genetic condition that's screened for in the UK. Meanwhile the CRELD1 paper means that when people have genetic testing, CRELD1 will now be one of the genes that is tested, thanks to the work by the charity Both families want to encourage others to share their story.
Glasgow Times
12-06-2025
- Health
- Glasgow Times
Glasgow mum's experience raising child with Dravet Syndrome
Glasgow mum Marie McLeish has a child with Dravet Syndrome - a rare and severe form of epilepsy. Her daughter Amanda, 35, lives with the condition, which affects around one in 15,000 births and often causes seizures, intellectual disability, and serious mobility and behavioural challenges. Read more: Care reform Bill passed unanimously at Holyrood Marie said: "When Amanda was 18 months old, she had 100 myoclonic seizures in one day while sat in her buggy. "The buggy was the only safe place for her to be at that time because of the risk of her falling while having a seizure. "We were literally sat watching her praying she would not go into a long seizure requiring emergency hospital admission. "For the first five years, me and my husband took it in turns to watch her all night. "It was terrifying." Marie is sharing her experience of living with the condition as part of new research from the University of Glasgow into the psychological impact of Dravet Syndrome on families, published in the European Journal of Paediatric Neurology. The study, conducted in partnership with Dravet Syndrome UK, found parents commonly experience symptoms of PTSD, depression, and anxiety due to the constant trauma of emergency hospital visits, intensive care stays, and the lifelong 24-hour care their children require. It also found most parents felt there was a lack of support for those caring for a family member with Dravet Syndrome, which can have a toll on their mental health. Marie said: "I am sure I have had PTSD. "It's a time bomb, you never know when you are going to be back in an ambulance, back into hospital. "We never knew when she would have a seizure. "At that time, all we were offered were anti-depressants, but I didn't want to risk feeling groggy, I couldn't afford to not be on high alert. "Much more awareness is needed of Dravet Syndrome. "Parents need other parents to talk to, or someone who 'gets it'. "Otherwise, you are so isolated. "Every parent caring for a child with Dravet should be offered counselling, but I've never been offered it." Read more: Meet the woman who fled from the Taliban and now pursuing her dream career Dr Anthony Mercier, who conducted the study, said: "Parents and carers taking part in our study shared that they have experienced major psychological distress due to the repeated trauma of dealing with seizures, emergency hospital admissions, and the fear of SUDEP. "Almost all said they had experienced symptoms of PTSD as a result of the repeated trauma." Professor Liam Dorris, lead researcher and clinician at the Royal Hospital for Children in Glasgow, said the study highlights the urgent need for professional support. He said: "We hope that this study can be used to inform professional practice, and to develop packages of support, including targeted therapeutic interventions for parents of children with Dravet Syndrome and similar developmental epilepsies." Galia Wilson, chair of trustees for Dravet Syndrome UK, says: 'Dravet Syndrome is a devastating, life-long and life-changing condition that affects the emotional well-being of all the family, but all too often this is overlooked. 'This research serves as a call to action for greater awareness among all professionals involved in the care of families affected by Dravet Syndrome – to be mindful of signs of psychological distress and trauma, and the importance of offering therapeutic interventions, such as talking therapies." 'By empowering parents like Marie to share their experiences, Dravet Syndrome UK hopes to bridge the gaps in understanding and help drive meaningful change.' More information about the condition and some of the support available can be found on the Dravet Syndrome UK website.
Express Tribune
28-05-2025
- Entertainment
- Express Tribune
Dove Cameron pays tribute to Cameron Boyce on his 26th birthday
On what would have been Cameron Boyce's 26th birthday, Dove Cameron and fellow Descendants cast members paid tribute to the late Disney star, who passed away in 2019 due to epilepsy complications. Cameron Boyce died at age 20 after suffering a seizure in his sleep. On Wednesday, May 28, Dove Cameron honored her close friend and former co-star by posting a series of black-and-white photos on Instagram. Her caption read, 'I still feel you all the time. catch you in the next life. happy birthday. i love you.' The post included touching images of the two embracing, a tattoo Dove got in his honor (a firearm with roses, symbolizing Boyce's anti-gun violence advocacy), and a group photo with Descendants co-stars Sofia Carson and Booboo Stewart. Carson also shared a tribute, featuring a photo of Boyce mid-dance with the caption, 'Keep dancing in heaven, my Cam. Earth could never be the same without you.' Stewart posted a Story saying, 'Love you always, happy birthday,' over a nostalgic image of them sharing a milkshake. Director Kenny Ortega, who worked closely with Boyce on the Descendants films, wrote a heartfelt message praising Boyce's light and legacy, encouraging fans to support the Cameron Boyce Foundation. The organization focuses on using the arts for positive change and raising awareness about SUDEP (Sudden Unexpected Death in Epilepsy). Cameron Boyce's memory continues to inspire through the foundation's mission and the ongoing love from those who knew and admired him.
Scotsman
25-05-2025
- Health
- Scotsman
Spike in Scots living with epilepsy as charity launches awareness drive
Fears that thousands of Scots may be at risk without adequate support Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Far more people in Scotland are living with epilepsy than has previously been reported amid calls from a leading charity to boost awareness about the condition. Epilepsy Scotland pointed to new statistics which shows that an estimated 80,406 people in the country are living with epilepsy. It has raised concerns that thousands of Scots could be at risk without adequate support. Advertisement Hide Ad Advertisement Hide Ad Although it has long been one of the most prevalent neurological conditions nationally, that figure, detailed in statistics published by Public Health Scotland, the national health agency, represents an increase of 38.6 per cent on the longstanding figure of 58,000 cited by charities, health services, and politicians. Roughly one in every 100 Scots has epilepsy. Picture: Epilepsy Scotland Now, as part of National Epilepsy Week, the leading charity has called for more open and informed conversations about epilepsy and its risks, including sudden unexpected death in epilepsy (SUDEP), a rare and fatal complication. The charity, which works to ensure people living with epilepsy have access to high quality medical, social, educational, and support services, and can be free from stigma and discrimination, said the updated figures showing the number of people living with epilepsy highlighted the importance of ensuring that those affected receive appropriate support. Lesslie Young, Epilepsy Scotland's chief executive, said: 'These new figures give us a clearer picture of the number of people affected by epilepsy in Scotland today. Most people with epilepsy live full, independent lives — but for some, the condition brings more complex challenges. Advertisement Hide Ad Advertisement Hide Ad 'Our campaign this year focuses on ensuring that people with epilepsy, their families, and clinicians are supported to have sensitive, open conversations about SUDEP. With greater understanding comes greater confidence to manage risk and support wellbeing.' Epilepsy Scotland's Lesslie Young | Epilepsy Scotland SUDEP refers to the sudden, unexpected death of a person with epilepsy, where no other cause of death is found. While uncommon, it is one of the most serious potential outcomes of epilepsy. Research suggests that up to 12 per cent of people with difficult-to-manage epilepsy may be affected. In Scotland, it is estimated that up to two people die each week as a result of SUDEP, yet many individuals and families remain unaware of the risk. Separate Public Health Scotland data shows there has been a clear increase in the number of deaths in Scotland where epilepsy was recorded as the underlying cause on the death certificate. While there were 104 such deaths recorded in 2008, the number stood at 135 in 2023. The number of men dying where epilepsy is deemed to be the underlying cause went up from 68 to 79 over the same period, with the respective figures for women also up, from 36 to 56. Advertisement Hide Ad Advertisement Hide Ad Epilepsy Scotland's current campaign, The Seizure that Stole a Future, is focused on sharing personal stories of people whose lives were cut short by epilepsy in an attempt to bolster recognition of the emotional and practical realities families face.
Scotsman
25-05-2025
- Health
- Scotsman
Spike in Scots living with epilepsy as charity launches awareness drive
Fears that thousands of Scots may be at risk without adequate support Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Far more people in Scotland are living with epilepsy than has previously been reported amid calls from a leading charity to boost awareness about the condition. Epilepsy Scotland pointed to new statistics which shows that an estimated 80,406 people in the country are living with epilepsy. It has raised concerns that thousands of Scots could be at risk without adequate support. Advertisement Hide Ad Advertisement Hide Ad Although it has long been one of the most prevalent neurological conditions nationally, that figure, detailed in statistics published by Public Health Scotland, the national health agency, represents an increase of 38.6 per cent on the longstanding figure of 58,000 cited by charities, health services, and politicians. Roughly one in every 100 Scots has epilepsy. Picture: Epilepsy Scotland Now, as part of National Epilepsy Week, the leading charity has called for more open and informed conversations about epilepsy and its risks, including sudden unexpected death in epilepsy (SUDEP), a rare and fatal complication. The charity, which works to ensure people living with epilepsy have access to high quality medical, social, educational, and support services, and can be free from stigma and discrimination, said the updated figures showing the number of people living with epilepsy highlighted the importance of ensuring that those affected receive appropriate support. Lesslie Young, Epilepsy Scotland's chief executive, said: 'These new figures give us a clearer picture of the number of people affected by epilepsy in Scotland today. Most people with epilepsy live full, independent lives — but for some, the condition brings more complex challenges. Advertisement Hide Ad Advertisement Hide Ad 'Our campaign this year focuses on ensuring that people with epilepsy, their families, and clinicians are supported to have sensitive, open conversations about SUDEP. With greater understanding comes greater confidence to manage risk and support wellbeing.' Epilepsy Scotland's Lesslie Young | Epilepsy Scotland SUDEP refers to the sudden, unexpected death of a person with epilepsy, where no other cause of death is found. While uncommon, it is one of the most serious potential outcomes of epilepsy. Research suggests that up to 12 per cent of people with difficult-to-manage epilepsy may be affected. In Scotland, it is estimated that up to two people die each week as a result of SUDEP, yet many individuals and families remain unaware of the risk. Separate Public Health Scotland data shows there has been a clear increase in the number of deaths in Scotland where epilepsy was recorded as the underlying cause on the death certificate. While there were 104 such deaths recorded in 2008, the number stood at 135 in 2023. The number of men dying where epilepsy is deemed to be the underlying cause went up from 68 to 79 over the same period, with the respective figures for women also up, from 36 to 56. Advertisement Hide Ad Advertisement Hide Ad Epilepsy Scotland's current campaign, The Seizure that Stole a Future, is focused on sharing personal stories of people whose lives were cut short by epilepsy in an attempt to bolster recognition of the emotional and practical realities families face.
