Alain CornetAt the recent American Congress of Rheumatology in San Fransisco this week, we received fantastic news on two promising trial results. 1. AstraZeneca Phase IIb Anifrolumab 300 mg showed positive results, where it produced a response in 34.4 percent of patients after 169 days of treatment and this rose to more than 50 percent after […]
Alain CornetThis is just a reminder that the December deadline for patient stories is fast approaching. If you are a member of one of our patient organisations and want to share your story please send it to katharine@lupus-europe.org
Alain CornetEPF is launching a second consultation on a draft position on defining and measuring access to healthcare. The position paper was developed with the working group on access. The first consultation was held in September/October. Lupus Europe is involved in this working group and your input to the consultation would be much appreciated if you […]
‼️ 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
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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Last Monday, we held an Interim Review Meeting online with our National Members. We were thrilled to see so many familiar faces! 😃
During the meeting, we gave an update on the progress of Lupus Europe initiatives and discussed priorities for 2024. We were also delighted to hear from our members about the great activities they are undertaking in their own countries and communities.
We were astonished by the passion and commitment of our members, and we are grateful for their continued support of Lupus Europe. We know that together, we can support each other as we work towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus💪.
We want to thank everyone who attended the Interim Review. Your participation and contributions were invaluable. We also want to remind you that our communication channels are always open. Do reach out to us whenever you need anything!
Together, we are stronger 🙌
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It was a beautiful and interesting meeting.Thank you all.
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