Dravet Syndrome European Federation’s Post

🌟 Exciting News Alert for Adult Epilepsy Patients! 🌟 Mark your calendars for May 1st because we have some fantastic news coming your way! If you or someone you know is living with epilepsy, you won't want to miss this update. Stay tuned for exciting announcement that will be a first for adults with epilepsy living in SC. Spread the word and join us in anticipation as we countdown to May 1st! #EpilepsyAwareness #StayTuned #scepilepsy #epilepsyallianceamerica 🧠💡

SUDEP Action Day on Oct. 16 is a crucial time to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP). This year’s theme, #OurRisksOurRights, highlights the importance of understanding and reducing risks while prioritizing safety. Join us and our partners in continuing the conversation about SUDEP. Learn more: https://lnkd.in/eRYAjUPV #SUDEPActionDay2024

26th March, 2024 last week, marked a powerful moment as we came together on Purple Day to shine a light on epilepsy awareness, knowing that 12,000 Australians are diagnosed with this condition every year. 💜 Follow the link to delve deeper into the personal journey of Brett Schatto, shedding light on the challenges and triumphs of navigating life with epilepsy — https://lnkd.in/g295RxAJ #epilepsy #epilepsyawareness #purpleday #prideadvice #priceadviceblog #blog

Our webinar, "Preparing for Summer Camps: Medication Lists & Rescue Therapies," is now available on our YouTube channel. Hear from experts about the importance of having rescue medications readily available at summer camps for children with epilepsy. Watch now: https://lnkd.in/gnte6qZ8

Are you wondering about epilepsy treatment options for your child? Ant-seizure medications (ASMs) are often the first line of defense, typically taken one to two times daily. Deciding whether to start medication for your child is a weighty decision, not made lightly, and doctors generally hold off on prescribing until after at least two seizures. Your doctor will weigh the pros and cons with you and discuss suitable ASMs tailored to your child's epilepsy type, considering potential side effects. Finding the right medication may take time, with adjustments in dosage or even trying different medications to control seizures while managing side-effects. Treatment continues until your child is at least two years seizure-free, then discussions may arise about reducing medication. It's a journey, but ensuring your child's safety and quality of life is important. If you would like more information on children and ASMs, please visit https://lnkd.in/gF8tuivB or contact the National Epilepsy Support Service on 1300 761 487 or support@epilepsysmart.org.au Face-to-face meetings are by appointment only. #EpilepsyFoundation #Epilepsy #AntiSeizureMedications #EpilepsySupport #Seizures #EpilepsyAwareness #EpilepsyResources

This year our SUDEP Action Day theme is #OurRisksOurRights Not everyone with epilepsy is aware of SUDEP or epilepsy risks. It’s important to learn your individual risks and learn the positive steps you can do to reduce them if you’re living with epilepsy. Share this post to spread awareness and join us on 16th October for #SUDEPActionDay2024

Sudden Unexpected Death in Epilepsy or SUDEP…This is what many healthcare providers fail to mention and discuss.Several surveys have shown that patients would rather know early so they can be more proactive and knowledgeable about it. Education can save lives. #SUDEPprevention#SUDEPeducation#epilepsyawareness#pediatricepilepsy

It's SUDEP Action Day. Sudden Unexpected Death in Epilepsy is a serious topic but very few of us know enough about it. Whether you are a caregiver for a person with epilepsy, or are yourself a person with epilepsy, YOU have the right to life-saving information. Seizure detection devices help people with epilepsy stay safe by notifying loved ones during a seizure. Learn more about SUDEP and explore these devices with the help of the The Danny Did Foundation: https://lnkd.in/gwkeWwiB. The brochure is also available in Spanish: https://lnkd.in/gQnc3xTm. Stay informed and take steps to protect yourself and those you love. #OurRisksOurRights #SUDEPActionDay20

Support for Epilepsy Care with the Alert-iT Companion Mini and Mini Pro 🛡️ Caring for someone with epilepsy requires vigilant monitoring and quick responses. The Alert-iT Companion Mini and Mini Pro are designed with this in mind, offering reliable, round-the-clock tracking to ensure the safety and well-being of your loved ones. Key Features: • Seizure Detection: These devices provide continuous monitoring for signs of seizures, offering early alerts to help prevent emergencies. • Instant Alerts: Customisable alerts notify you immediately, ensuring that you can take swift action when it matters most. • Compact and Comfortable: Discreetly designed, the Companion Mini and Mini Pro fit seamlessly into any care environment, providing comfort and peace of mind for the user. With the Alert-iT Companion Mini and Mini Pro, you can enhance the safety and care of individuals with epilepsy, knowing they are always protected. 🔗 Discover how these devices can support your epilepsy care strategy by visiting https://lnkd.in/gg4RRUda or contact us at 0818 999 247. #EpilepsyCare #SeizureMonitoring #HomeCare #TunstallEmergencyResponse

It is difficult for me to write this, but I feel it needs to be spoken about: SUDEP (Sudden Unexpected Death in Epilepsy). Please speak with your Doctor/Neurologist about the risks and put an action plan to prevent it if risks identified. "You matter, unbelievably so. Such a ‘mum’ thing to say I know, but do take your medication as prescribed. Ask your clinicians about SUDEP and the risk factors. Ensure you are given information relating to seizure detection devices and safeguarding aids. Understanding fully about your diagnosis and SUDEP can be empowering. It will help keep you safe." Joanne Doody. Peter Doody Foundation have produced this short video to raise awareness of SUDEP: https://lnkd.in/enTD49uP More information and support can be found on Epilepsy Action Website: https://lnkd.in/etrEw4De #SUDEP #epilepsyawareness #epilepsywarrior #epilepsy