Letter to the Doctor – From the Lupus Europe Youth Group

Image shows the participants of the Lupus Europe 2nd Patient Panel on Youth, in a meeting room. Participants are split into two groups, across two tables and they are in the middle of a workshop. A slide on being a young patient with lupus is projected onto the screen. On February 3-5 2023, Lupus Europe organised its 2nd Patient Panel on Youth, bringing together 10 young people from all  over Europe to share their experience of living with lupus. The Panel addressed key issues young participants identified in their life with lupus and explored the possibility of creating a Lupus Europe youth group.

 

 

 

 

 

In their own words, Participants write: 

A group of European Young adults who are living with lupus met in Barcelona in February 2023 to discuss how to best support the next generation of people with lupus. Collectively, we put together what we would like to share about our treatment and experience of living with lupus with doctors.

To read the letter, go to: https://www.lupus-europe.org/wp-content/uploads/2023/07/Letter-to-the-Doctor.pdf 

 

As a result of this Patient Panel, many of those young adults went on to form the Lupus Europe Youth Group. To find out more about this initiative e-mail secretariat@lupus-europe.org. To apply to join the next Youth Group Meet Up due to take place in October 2023, go to:  https://www.lupus-europe.org/lupus-europe-youth-group-meet-up/

 

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Zoe Karakikla-Mitsakou

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    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 🤗.

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    LUPUS EUROPE
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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     ... See MoreSee Less

    ‼️ 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. Its 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, its never too late to start. Exercise is safe and a step towards enhancing your health, even if youve 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 youre 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. Lets inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪 https://ard.bmj.com/content/82/1/48Image attachmentImage attachment+1Image attachment
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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    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     ... See MoreSee Less

    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, lets 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, its 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! ➡️ https://www.lupus-europe.org/me-lupus/ 🌈 Your journey to improved well-being can begin with us! Lets #KickLupus together!💪 Always consult a healthcare provider before beginning any exercise regimeImage attachmentImage attachment+6Image attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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