Zoe Karakikla-MitsakouLupus Europe Youth Group Meet Up Lupus Europe is organising a Meet Up of the Lupus Europe Youth Group! This event will take place from October 20 to October 22, in Leuven (Belgium). There are a few remaining spots available for new members to join: Do you have lupus? Do you live in geographical Europe? […]
Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetWe’re delighted to share a really great video interview of three patient advocates telling us more about why they get involved. The video was made during the Eyeforpharma event in Barcelona and stars our very own Nuria! To view the video please click here.
‼️ Exercise is not only fundamental to general health but especially vital for individuals facing RMDs like #lupus.
➡️ According to the @WHO, physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.
#KickLupus
✅ Do you REMEMBER the #PHOTOLUP Study 🌞 about #photosensitivity in #Lupus? I'm VERY HAPPY to report that the paper has been ACCEPTED in a very good journal 👍 Thanks to ALL of you with lupus who have contributed 🙏 and of course we will soon show the detailed results 👌
🚨 Only one day left!
🌟 Join our Webinar on digital health! 🌟
⏲️ Time is running out!
📧 Email: secretariat@lupus-europe.org and secure your spot!
✅ Engage with Dr. Philipp Bosch.
✅ Explore tech's potential in healthcare.
🗓️ Sep 28 (tomorrow!)
🕗 20:00 CET
✅ In line with the new #EULAR recommendations, #hydroxychloroquine is recommended for all with #lupus (unless contraindicated). If you haven't done so yet, have a look 👀 at our Editorial in @TheLancetRheum ⬇️ regarding #EMA concerns about the potential teratogenicity of #HCQ
‼️Lupus can have an impact on mental health.
🚶♀️Exercise can help #KickLupus by managing stress, anxiety & depression.
It can be a good aid in promoting relaxation & ⬇️ stress, offering a positive coping outlet.
Remember: #MentalHealth is important. Talk to your doctor about it
✅ The third statement of the new #EULAR #recommendations 🆕 for #LUPUS is a BIG CHANGE 🚨 because patients unresponsive to HCQ (+/-GCs) can now start immunosuppressive agents and/OR #BIOLOGICS 🔥
do YOU agree with early use of biologics? Is this really data-driven? 🆗
‼️Lupus can affect mobility with joint pain & muscle weakness.
✂️Tailored exercises can improve flexibility, ⬇️pain & ⬆️quality of life.
There are some examples in our exercise programme! https://buff.ly/3LAO45m
📷Let's show how we #KickLupus by adapting our exercise routine!
🧑🤝🧑 To support patients, caregivers, and healthcare professionals in managing #rheumatic and #musculoskeltal diseases (RMDs), #EULAR produces Lay versions of its Recommendations.
🌍EULAR's Lay summaries and translations can be found here 👉https://pulse.ly/nxav3xpor2
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If you have any questions or any points you would like to raise, please feel free to do so here! 😃
Only one day left for the great day!
🌟 Don't miss our webinar on digital health & patient care! 🌟
⏲️ Time is running out to secure your spot at our transformative webinar.
💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.
Here's a glimpse of what awaits you:
✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
✅ Explore the boundless potential of technology in advancing healthcare.
🗓️ Date: September 28th (tomorrow!).
🕗 Time: 20:00 CET.
This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.
Join us and empower yourself with the knowledge that can transform lives! 📱🏥
The webinar will also be streamed live on Facebook. 🎥
Secure your spot now by registering:
📧 Email: secretariat@lupus-europe.org
If you have registered for Zoom already, please ensure you attend via Zoom 🤗.
See you at the webinar!
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‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.
According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.
👩⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs.
Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:
1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. It's a win-win for your health!
2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.
3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs.
4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.
5️⃣ Remember, it's never too late to start. Exercise is safe and a step towards enhancing your health, even if you've been less active before. Every step counts!
6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.
🦋 If you're dealing with lupus, know that exercise can be a game-changer for you too, especially for managing symptoms and enhancing your quality of life.
📷 Embrace the power of exercise in managing lupus and share your journey using #kicklupus.
Let's inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪
ard.bmj.com/content/82/1/48
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Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.
Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.
🔵This week, let's highlight the unique benefits of physical activity for individuals with lupus:
1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.
2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.
3️⃣ Mental Health and Coping:🧘♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety.
4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.
5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment!
6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.
7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.
🔴 For individuals with lupus, it's essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.
That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ www.lupus-europe.org/me-lupus/
🌈 Your journey to improved well-being can begin with us!
Let's #kicklupus together!💪
Always consult a healthcare provider before beginning any exercise regime
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