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@epilepsyaction See full size profile   The UK's leading member-led epilepsy charity. Providing information and support for anyone affected by epilepsy 💜

2 weeks ago

"If you know someone with epilepsy or any other seizure disorder, don’t be afraid. Trust me, we already are. A bit of support and reassurance goes a long way. If there are any questions, ask. The more you know about it, the more relaxed you’ll be. It’s hard enough that our own brain goes against us, please don’t be the person to go against us too." Brilliant words from @_seizuregirl_ - you can check out her full blog via the link in her bio. #epilepsy #epilepsyawareness #epilepsywarrior #epilepsyfighter #epilepsysucks

1 month ago

A friend was telling me how he's had multiple seizures in his life this weekend. I asked if he had ever considered it being epilepsy. His response "nah, I'm good with flashing lights." He was shocked when I told him photosensitivity accounts for around 3% of epilepsy diagnosis. Seizures don't occur just because of flashing lights 😲 I think it's worth remembering how common a misconception this is. There are so many different types of epilepsy as well as seizure types. Would your friends/family know that? Find out about different seizure types this #WorldBrainDay at the link in our bio. Rich - Epilepsy Action #epilepsy #epilepsyawareness #epilepsymemes #epilepsywarrior #epilepsyfighter #epilepsylife #seizures #seizuressuck

1 month ago

"I have been having seizures for around ten years now, my husband, family and friends are all aware of the procedure should they witness me having a seizure. My little girl Esme has recently turned four, since around the age of three we’ve tried to explain more to her about my epilepsy, she’s seen me have fits, but fortunately another adult has always been present. She’s always taken it in her stride and says ‘Mummy’s brain goes to sleep.’ In June, my worst fear became a reality. At home alone with my four and one year old girls, a seizure struck. As always, I remember nothing. But when I came round, I was covered with a blanket and Esme was holding my hand. Her Nana soon came to the door and started to fill in the blanks. I had a seizure, Esme covered me with a blanket, and entertained her baby sister with toys. My husband Ash phoned my mobile and Esme answered explaining ‘Mummy’s brain has gone to sleep.’ We are very lucky that Ash’s Mum lives around the corner and was able to come straight round to help. I am so proud of Esme, she stayed so calm and remembered what we had taught her- she really is my hero!" Thank you Lisa for sharing your story. Esme really is a  #SeizureSaviour  💜 #epilepsy #epilepsyawareness #epilepsysucks #epilepsywarrior #epilepsysupport #epilepsypositivity #epilepsysucks #seizures #seizuressuck #hero

1 month ago

Thank you Freddie and mum Vicki for sharing this video with us. Freddie has focal epilepsy and isn't always aware when he has seizures. Do you know what to do if you see someone having a focal seizure? Do you know what to look out for? Visit epilepsy.org.uk/focal for our information and advice on focal seizures. Freddie was diagnosed with epilepsy in July 2016. He has focal epilepsy and has seizures in his sleep. This means he is not fully aware when he’s had a seizures. However, there have been a few occasions when he’s had seizures in the day, so he’s able to say that he ‘went funny’. He takes medication daily and his seizures can go from once a month to 24 times a month, which can be very unpredictable and have a big impact on his education and home life. Freddie’s needs are becoming more demanding as he gets older. He has less social interaction than normal. He struggles to go to the toilet himself and still needs help with every day duties. He also needs his mum Vikki to settle him to sleep and stay with him for at least an hour after he falls asleep in case a seizure occurs. He has trouble concentrating on individual tasks whether at home or at school. He’s very clumsy and falls over the smallest things - as a family they laugh that he falls ‘over fresh air’. Vikki said: “I personally feel although the school are aware of his epilepsy they support as much as possible but are not always aware if Freddie needs support or may have a conscious seizure as they are not aware of the signs. Both myself and Alfie’s mum Julie think the school could do more but they need to be more aware of how epilepsy shows itself.” She added: “I think people need to know that epilepsy shows itself in different ways. Not every person who has epilepsy show the same signs. Some people have absence seizures where they look as if they are daydreaming to the extreme where you have tonic-clonic seizures and you fall to the floor and shake. As each adult and child with epilepsy can experience their seizures differently, it can be hard to live with epilepsy.” #epilepsy #epilepsyawareness #seizures #focalseizures #epilepsywarrior #epilepsysupport

1 month ago

"It affects my mental health. I can't be alone. I can't go to a bar like a normal 29 year old... (my dad) has had to dig vomit from my mouth because I was blue." That's the reality for some people living with epilepsy, like Nikkita who spoke to BBC Radio 4 this morning. Despite this, she has been told that she is ineligible to receive a carer. . . . People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses, including many of you who took the survey for epilepsy. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions. The Neurological Alliance argues that a National Plan for Neurology in England must be urgently developed to address the failings in the system. We agree. #epilepsy #epilepsyawareness #epilepsywarrior #epilepsysupport #seizures #NeuroSurvey

1 month ago

What is your experience of discussing contraception and epilepsy with doctors? Louise has been in touch with us and said “I’ve had a few negative experiences. When I was younger I was being asked if it was really the most important thing to be worrying about?” She said there was a “lack of information on drug interactions between my epilepsy medication and the pill.” “Most recently I saw a new doctor for a last minute appointment because they'd discontinued the brand of contraceptive pill I was on. He suggested sterilisation as an alternative with no discussion, no other less permanent solutions and the most 'sensible solution.' Considering I'm 36 and have one child (so potentially might want more) this absolutely appalled me. Would that have been suggested to a 'normal' woman?” Do you have any similar stories? Any tips on getting healthcare professionals to listen to your concerns? If you need any information about different methods of contraception and how they may be affected by epilepsy or epilepsy medicines, we recently updated our epilepsy and contraception information - epilepsy.org.uk/contraception #epilepsy #epilepsyawareness #pregnancy #epilepsywarrior

2 months ago

Swipe ➡️ "Just seeing the difference it makes to other people reaffirms that it's absolutely something worth doing." Gurvinder, Emily, Louise and Simon talk about their experiences volunteering for Epilepsy Action in their own words 🤗 (they were so good we had to split into 3 parts) We have lots of volunteer roles available! From running support groups and local events to reviewing research and information or becoming a media volunteer. We'd love to have you involved! Find a role for you at the link in our bio. #epilepsy #epilepsyawareness #volunteerweek #volunteering #epilepsysucks #epilepsywarrior

2 months ago

We're celebrating #VolunteersWeek this week by sharing stories of some of the fantastic people that help us. Thank you to all our volunteer's 🙏 we wouldn't be able to do it without you 💜 Maureen Taylor and David Streets have been key in the development of the Sheffield Branch of Epilepsy Action, which was initially set up in 1989. It is now one of the most consistently best attended branches in the north of England. Maureen has served as secretary since the branch was set up, becoming an accredited volunteer soon after, a role she also continues to perform. David was also a founder member of the branch. He has served as the branch’s treasurer, and Chairman. Since 2002 he has served as Vice-Chairman focussing on Public Relations. Between 2003 to 2009 he served as a member of the board of Trustees of Epilepsy Action. Maureen has epilepsy and has a background in psychiatric nursing. Through her work, she became aware of the need for a support group. Maureen then contacted what was the British Epilepsy Association to set up the Sheffield Branch. David’s son has epilepsy, which led him to learn more about the condition. He has a natural desire to help support and inform people affected by the condition – patients, families and the general public. "I am delighted that the long standing dedication of David and Maureen has been recognised. I know they do not do all that they do in order to obtain public acclamation; they do it because they believe it needs doing. Nevertheless, it is fitting that their efforts over many years is recognised and we are able to thank them in this way." Duncan Froggat, current Chairman of the Sheffield Branch, said. Thank you Maureen and David! #epilepsy #epilepsysucks #epilepsywarrior #epilepsyawareness #seizure #seizuressuck

3 months ago

“One time I had a seizure on the platform at London Bridge. Luckily, a member of the public was able to catch me as I was about to fall in my tonic clinic seizure. They protected my head, administered first aid and stayed with me until a member of my family got to the station and picked me up. “My wife has told me this story. I was walking whilst on the phone her and started to have a seizure. A passer-by saw what happened and helped me. He managed to get help from another stranger, who worked nearby, and who called an ambulance. While they were waiting they protected my head and put me in recovery position. They also notified my wife and stayed with me until she arrived. “I don’t think it is simple for the public to step in. It’s depends if the helper is first aid trained or aware of epilepsy. In my case, I get an aura before, so I’m able to seek help from those around me. A lot of the general public are scared to help because they don’t know what to do, or they think someone with epilepsy is drunk. “I carry an epilepsy ID card in my wallet and also wear a medical bracelet. A few helpers have accessed my phone and used the emergency setting to call a relative of mine. “My previous experiences have put me and my wife at ease. I feel more positive about my day to day life and public being helpful. So far, I feel very safe out and about.” Thank you Daniel for sharing your #SeizureSaviour story this #EpilepsyWeek 💜 #epilepsy #epilepsyawareness #seizures #seizuressuck #epilepsysupport #epilepsywarrior #epilepsyfighter

3 months ago

Angel (17) was diagnosed with epilepsy when she was 14. She has had very mixed experiences with her epilepsy in public. “My seizures are usually once a month and can be triggered by stress. Last year I was seizure free and then in January this year I had 2 seizures. I have tonic clonic seizures but also bad memory problems, chronic headaches and chronic fatigue syndrome. “Once, I was on the bus and started to have a seizure. My sister screamed for the driver to stop and he didn’t. A lady told my sister to calm down, but my sister carried on and then they finally stopped the bus. An ambulance was called. My sister told me that people were complaining because they wanted to go home. Another time I had a seizure on the bus, the driver immediately stopped and gave me first aid. He acknowledged the situation and wanted to help. “My mum had asked my secondary school if they were all trained for first aid. She told them they could get free training for students and teachers from an epilepsy charity. They declined and said that they were all trained. Then I had a seizure at school. I fell off my chair and no one knew what to do. My teacher was swearing, people were crying, and my classmates had to run and get help. Another teacher said it wasn’t important. I got a concussion and a massive bump on my head and my right arm and leg were all bruised. “I think people should get over the fact that seizures look quite ‘traumatic’. We’re the ones who go through it. At the end of the day you don’t have a bitten tongue, swallowed blood that upsets your stomach, an extreme headache, and feel extremely exhausted. It’s a life or death situation and not many people get that. I think it’s very important to know about epilepsy. It’s difficult because not many people know what it is until you or a family member has it. Epilepsy changes your life drastically. For anyone who has epilepsy, you are brave, you are strong, you have fought hard and now look where you are. You should stand tall and be proud because if seizures can’t stop you, nothing can. Don’t give up, always have endless hope. Don’t let epilepsy bring you down.” #epilepsy #epilepsyweek #epilepsyawareness

3 months ago

Becky's first seizure happened in February 2018 when her son found her on the bedroom floor. Medical tests came back inconclusive and she was told it was a one off. Six months later, Becky was driving home from work when she had a seizure behind the wheel. A man in a white van saw what was happening. He swerved in front of her to stop her crashing into oncoming traffic, causing damage to his own vehicle. The woman in the car behind her was a nurse and rushed to give her first aid. Even one of Becky's friends had spotted her, pulling over to help. Thankfully she was fine and after extensive medical tests, she was diagnosed with epilepsy and began taking medication. She said' "I've never been able to contact the man or the nurse to thank them, despite trying numerous times. I owe my life to them - as well as my 15 year old son who found and helped me the first time I had a seizure." Becky has remained seizure free since taking her epilepsy medication but her life has changed significantly. She said: "I have had to give up my driving licence – life- changing in itself, as I had been driving longer than I hadn’t. I have also had to massively cut down on alcohol as it can interfere with my medication, so I can quite often feel like a party pooper when I go out. But these are small prices to pay to remain seizure-free. I recently did a sponsored boxercise event where I took over the class for an evening – doing boxercise has been my escape since being diagnosed.” Becky is sharing her story for National Epilepsy Week to help people to understand more about epilepsy and to give them confidence to know what to do to help. “If you see someone having a seizure, the best advice I can give is don’t be scared. Because I can guarantee the person having the seizure will be much more scared when they come round. I know from my own experience how important it is to see a friendly, reassuring face.” #epilepsy #EpilepsyWeek #epilepsyawareness #seizures #seizure #epilepsypositivity

3 months ago

"I was at the gym a few weeks ago doing an early morning spin class with my manager from work. At some point during the workout I realised I had no idea of how I got to the gym and couldn't recall anything. Before I knew it, I was in the changing room with paramedics. I'd had a tonic clonic seizure. All I remembered was hearing someone shouting that I needed an Epipen and not being able to protest. Having my manager there saved my life. She's as cool as a cucumber and was able to stop anyone trying to treat me with an Epipen – I cannot imagine how bad that could have been. She supported my head, got someone to call an ambulance, and even came to the hospital with me. Unfortunately, not everyone is this kind. I've only been in my current job for 6 months but the first thing I did when I started was circulate an email to my colleagues to let them know what to do if I had a seizure. At first, I was embarrassed to share the information because I didn't want to be a liability. But I'm so glad I did. It's often a conversation starter because people are actually curious to know what it's like. Since sharing the information, I now have a clear area of the office that I can go to if I feel a seizure on the horizon. I have a lot of focal seizures as well as tonic clonic seizures. It took a long time for doctors to recognise what was going on, and it took a life-threatening experience before people paid attention. After this Epipen incident, I made an epilepsy awareness post online. It showed the dream state I go into when I'm having a seizure, and what it's like to lose my inner voice after a seizure. It went viral overnight – there were so many people commenting that they had no idea epilepsy was like this. Seizures are such an unknown thing, and people fear the unknown. When you see someone pass out drunk or report sudden chest pain, generally people want to help and call an ambulance. It should be the same for epilepsy. I don't criticise society for this though, seizures and the aftereffects can be scary." - Beth #epilepsy #epilepsyweek #epilepsyawareness #seizures #seizuressuck

3 months ago

With  @watfordfcofficial taking part in the FA Cup final today, we wanted to put a spotlight on one of our media volunteers - Daniel. Daniel, who works as a performance analyst at the football club, was first diagnosed with epilepsy when he was seven years old. He has a mixture of seizures, including tonic clonic and focal seizures. When Daniel was a teenager, and his epilepsy was at its worst, he could have up to five seizures a day. He reached the semi-pro level playing football, but had to give it up because of his epilepsy. Daniel has since found work as a performance analyst at Watford FC. This is his story. Big thank you to Daniel and to Bournemouth University student @leocarty for sharing this video with us 💜 #epilepsy #epilepsyawareness #epilepsywarrior #seizures #seizuressuck #epilepsysucks #watford #mancity #football #soccer #facupfinal

3 months ago

This #MentalHealthAwarenessWeek let's not be afraid to talk about our mental health. Epilepsy can often be a lonely, isolated place. Many of us can feel stressed and anxious, even when our seizures are controlled. While seizures are the first thing that springs to mind when thinking about epilepsy, this is not the only challenge. We deal with things like triggers, tiredness, memory problems or medicine side-effects. We sometimes face challenges with work, education, and relationships, and we often have to deal with some difficult emotions because of our condition. Epilepsy can affect our feelings – we may lose confidence, start to feel low or feel like we have become isolated. After a while, these feelings can have a knock-on effect on our wellbeing and quality of life. If you need to talk, our freephone helpline is open 8.30am-8.00pm Monday-Thursday, 8.30am-8.00pm Friday and 10.00am-4.00pm Saturday on 0808 800 5050. You can also message us on Facebook, Twitter or Instagram @epilepsyaction or email helpline @epilepsy.org.uk. We have our forum at forum.epilepsy.org.uk - a community to talk about epilepsy, ask questions and chat with each other. If you're a reddit user, there's reddit.com/r/epilepsy and we also have an online wellbeing course available at https://learn.epilepsy.org.uk/courses/epilepsy-and-your-wellbeing/ to teach you how to take simple steps to manage your epilepsy and improve your wellbeing 💜 #epilepsy #epilepsyawareness #mentalhealthawareness #mentalhealth #epilepsysupport #epilepsywarrior #epilepsysucks #epilepsylife

3 months ago

Thank you to all our amazing #LondonMarathon runners yesterday. You all smashed it 💪🏃‍♂️👟💜

4 months ago

Are you (or do you know someone) age 16-25? Do you want to help develop future Epilepsy Action services for young people with epilepsy? We need you! 💥 Voice your opinion, develop your skills and take a leadership role in working with us. We're particularly interested in some more male applicants. Apply by contacting anna @leaders -unlocked.org by Friday 5 April 2019. UK only. #epilepsy #epilepsyawareness #epilepsysupport #youngepilepsy #epilespywarrior #epilepsysucks #seizures #seizuressuck #epilepsyaction #development #online #tool

4 months ago

Jenson, aged seven, has absence seizures on a regular basis, as well as tonic clonic, focal and atonic seizures. William, five, not only has absence, partial and tonic clonic seizures but also pica, an eating disorder which makes him crave non-food substances. This means he needs constant support and supervision. Their sister Darcie, four, was recently diagnosed with epilepsy. She has periods where she goes vacant and experiences partial episodes where she shakes. Their mum Rachael said: “Jenson, William and Darcie are three very happy, brave and wonderful children who take their epilepsy in their stride, the support and love they have for each other shines through. They understand they have epilepsy and it makes them 'shake, stay very still or makes them poorly’, needing an ambulance. As they have got older they are becoming more aware about seizures and Jenson has said ‘help’ a few times before he has a tonic-clonic seizure. “As parents, Ben and I are very positive about their epilepsy as we don’t want it to hold them back. If anything, we want them to feel proud of how strong and brave they are. I would like to think their epilepsy has helped to show true friendships and we have made friends aware they made need help if they have a seizure. They have lovely friendships groups. School are very supportive about the children’s epilepsy and are always very keen to raise awareness holding a "wear purple for epilepsy awareness day" on 26th March. When the children are poorly or unwell they support each other, offering hugs and showing concern which is lovely to see. “The support for each other continues through to the medications every day where we have ‘races’ with a drink and meds to see who can beat mummy and daddy. They cheer each other on and always win - again turning the medication aspect into a positive and fun thing" You can help more kids like The King Family get the support they need at an early age. Find out how at the link in our bio. #epilepsy #epilepsyawareness #PurpleDay #PurpleDay2019 #seizures #epilepsywarrior #epilepssupport #seizuressuck

4 months ago

“When I was 16, I was diagnosed with depression after a suicide attempt. They thought the depression was a side-effect from the medicine I take. But looking back, I think it was a mixture of that and me coming to terms with my epilepsy. This was a particularly bad period of my life. I had to leave school on my doctor’s advice. I realised that my friends just couldn’t understand my condition and it caused me to feel extremely isolated. My mental health problems were spotted by my mother. A week before my attempt she took me to the doctors. She asked them if I was depressed but they said I was okay. At the time, I was insistent to my mum that I was okay too. I don’t think I realised how severe it was until after my suicide attempt, or that I just felt unable to talk about it. Following my attempt, I saw a psychiatrist and multiple therapists until I found one that was a good match. The doctors were insistent that I needed to find a therapist or they would consider hospitalising me.” “I think what would have helped me is understanding that depression sometimes comes out in very different ways. For me privately it came out as sadness, but to my family it came out in anger. If I could have recognised some signs, it would have been really helpful. I wish I’d been made more aware of the websites or phone numbers that exist, where I could have discussed my mental health issues. If there could be any support specific to epilepsy and depression symptoms, especially for patients who've been recently diagnosed or on certain medications that have depression as a possible side-effect – that would really help them and their family too." #Epilepsy can be scary at any age. For children and families it can be terrifying. A donation from you today could really help people like Francesca learn to live with epilepsy at a younger age. Epilepsy Action produces special kids' packs that explain epilepsy in simple, understandable terms. They cost just £3 each, so your gift could help families understand the condition and know how to go about getting help and treatment. You really would be making a life-changing difference - epilepsy.org.uk/donate #PurpleDay