Latest news with #DravetSyndromeUK
Yahoo
15-06-2025
- Health
- Yahoo
Cornish charity boss completes month-long 5k-a-day challenge
A Cornish charity boss has completed a month-long challenge to walk or jog 5k every day. Claire Eldred, director at Dravet Syndrome UK, took part in the #EveryDayinMayForDravet challenge to help raise funds and awareness for the rare form of epilepsy. Dravet Syndrome is a severe neurological condition associated with epilepsy and learning disabilities, affecting one in 15,000 live births in the UK. Lucy Murphy, a young woman who has Dravet Syndrome, and Claire Eldred taking part in the challenge. (Image: supplied) Daily, those with Dravet often endure multiple seizures, and face a significantly higher risk of sudden unexpected death in epilepsy (SUDEP). Clare, who lives in Botallack, West Penwith, said: "I'm very proud to be doing #EveryDayinMayForDravet with and for all the families across the UK who are affected by this devastating, life limiting condition. "Sadly, it's all too common for individuals with Dravet Syndrome to have to wait months or even years to receive a diagnosis as sometimes even medics have not heard of Dravet. "I hope that raising awareness across Cornwall and the Southwest will lead to more families getting an earlier diagnosis and access to the treatment and support that they need." She also highlighted the importance of donations for the charity's continued work. Clare added: "As a small charity, all donations received make a huge difference in helping us to continue our vital work supporting and empowering families, educating professionals, and funding research. "A huge thank you to everyone who is sponsoring me or who is taking part or donating for #EveryDayinMayForDravet." The #EveryDayinMayForDravet challenge saw hundreds of participants across the globe, many of whom committed to 5k or 10k daily efforts. The challenge welcomed all ages and fitness levels, with some children participating in a 2k daily task. This family-friendly initiative is designed to not only raise funds but also to bolster community spirit and inclusivity among supporters. Dravet Syndrome UK continues to serve as a lighthouse for families who struggle with the complex challenges posed by Dravet Syndrome. They aim to ensure those affected receive timely diagnosis, treatment, and the essential support required for improved lives. To sponsor Claire or donate to the cause, visit the charity's JustGiving page. For more information, please visit Dravet Syndrome UK's website.
STV News
15-06-2025
- Health
- STV News
Rare form of epilepsy causing caregivers to develop PTSD
New research has shed light on the enormous psychological impact on families caring for a child or adult living with Dravet Syndrome. It's a devastating and complex form of epilepsy that affects around 1 in 15,000 babies – the mother of one woman living with the condition has compared the emotional impact to a form of PTSD. Marie McLeish's daughter, Amanda, was 18 months old when she suffered a series of debilitating seizures – a hundred in one day. She was eventually diagnosed with Dravet Syndrome – it's left her needing round-the-clock care for the last 36 years. 'We never slept properly for those first five years,' Marie told STV News. STV News Amanda McLeish Dravet Syndrome 'My husband and I would take shifts every night to make sure Amanda was safe. It has a major impact on the whole family, we're always on high alert. I know every sound in the house, it's 24/7.' She added: 'I don't actually think about it now, second nature to me, but it's had a huge impact on me. 'Anxiety levels, stress levels, I'm sure I've had PTSD throughout this time. It's very, very isolating as well.' The study, which was conducted by researchers at the University of Glasgow, provides new insight into the ways in which parents cope and adjust to caring for a child with Dravet Syndrome – with a focus on adapting to trauma. STV News Amanda McLeish Dravet Syndrome It highlights the challenges families face and reveals an urgent need for better informed professional practice, and the development of packages of support. 'We have done 35 years of caring and there is no end – there is no suitable accommodation or respite that would meet the actual needs of our loved ones,' Marie said. 'You just continue to do it through love. You continue to do it. You just hope and pray that something better will come.' Like her, parents taking part in the study described symptoms of psychological distress and PTSD. They also told how the lack of support needed to care for those affected presents a continual struggle for them with costs to their mental health. The condition can also cause intellectual disability and a range of difficulties with mobility, speech, behaviour, eating and sleeping. STV News Amanda McLeish Dravet Syndrome Additionally, those living with Dravet Syndrome are also at risk of Sudden Unexpected Death in Epilepsy – almost one in 5 children don't make it into adulthood. Marie said: 'You're putting your loved one to bed and it's the last thing that enters your head…hopefully we see you tomorrow. 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. 'Someone with Dravet Syndrome needs 24/7 care for life. Severe and life-threatening seizures mean parents must constantly be on alert, while the developmental, behavioural and mobility aspects of the condition require constant support and care. '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 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.' Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
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.
ITV News
03-06-2025
- General
- ITV News
Parents describe being on 'constant watch for seizures' raising child with Dravet Syndrome
Parents have described how they are on 'constant watch for seizures', while raising a child living with Dravet Syndrome. Lynda Davies, 38, and husband Thomas, 40, live with their three children in Port Erin on the Isle of Man. Seven-year-old Lyidan is the only child on the island known to be diagnosed with Dravet Syndrome. Lynda said: "His worst days are very long. He doesn't sleep so he might sleep for an hour all day and that is it, and then you're on constant watch for seizures." Lyidan had his first seizure at eight and a half months old. At 10 months old, a third prolonged seizure resulted in him being induced into a coma. He was blue lighted to hospital at least 50 times in just the first 12 months of his life and was diagnosed with Dravet Syndrome just before his first birthday. Lynda said: "At its worst it's watching your child turn blue, and having to be brave enough to administer his rescue medication". As well as still having frequent seizures, Lyidan has delayed development, which affects his speech, and is unsteady on his feet, all of which are part of how he is affected by Dravet Syndrome. Lynda said: "A lot of Lyidan's triggers are basic life so temperature control he struggles with - excitement, tiredness - everything that would come with just being a child. "He can be playing and the second he goes quiet he's not breathing, he goes blue and he needs rescuing". CEO of Dravet Syndrome UK, Claire Eldred, explains the difficulties of living with the condition. Dravet Syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties. It occurs in around 1 in 15,000 live births in the UK, and it is not uncommon for individuals to have multiple seizures day and night, in some cases hundreds. There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies. Claire Eldred says "It is quite common for there to be a co-diagnosis of autism or ADHD, so it has a huge impact on every day life. "Sadly there is also a higher risk of death with Dravet Syndrome than with other epilepsies so that is really scary for parents, it also means these children can never be left alone, so it is a case of 24/7 monitoring and that lasts for a lifetime". The Davies family are working to raise awareness of Dravet Syndrome and have taken part in a challenge to run 5 kilometres every day for a month. Thomas says "It's important for me to get the word out there, we felt very alone at first and that's why we want to raise awareness for the charity and the message is, there is always help out there so talk to somebody".
BBC News
02-06-2025
- General
- BBC News
Completing walking challenge with rare condition a 'miracle'
A woman has completed a challenge to walk 5km a day during the month of May in order to raise funds and awareness of the rare condition she has. Lucy Murphy, 25, from Exeter, has Dravet Syndrome - a form of epilepsy - and her walk raised money for the charity Dravet Syndrome UK which supports families of those with the Syndrome causes learning disability and a spectrum of associated conditions such as autism, ADHD and speech Murphy's mother, Denise Murphy, said her daughter's accomplishment was a "miracle" after frequent ambulance trips and admissions to intensive care throughout her life. 'Constantly seizing' Ms Murphy lives in supported accommodation and has a carer who helps her daily. She was diagnosed with the condition at the age of three, having had her first seizure at four months old, and she now has the comprehension ability of an eight or nine year old, her mother her early years she was "constantly seizing", Denise Murphy added."We knew every ambulance crew in the area," she said. "We made the decision to move house to be closer to the hospital and never travelled further than a 10-minute radius of our home in Exeter unless we had a nurse with us."Lucy is currently in the longest seizure-free period of her life and we never thought we would be in this position so it's a miracle really."Ms Murphy said she was trying to do as much as she could to raise awareness."If this can spread awareness to others it will make me happy to know I was a part of it," she said. 'Pretty remarkable' Claire Eldred, the Cornwall-based director of Dravet Syndrome UK, also took part in the challenge."What Lucy is doing is incredible," she said. "Dravet is a spectrum and... over 50% of adults need to use a wheelchair, over 50% will have severe to profound intellectual disability and many are non-verbal. "So it is actually pretty remarkable for a person with Dravet Syndrome to be able to take on something like this."
