16118354_10154744457400259_876025073_n

At the beginning of this year, LUPUS EUROPE launched a new initiative, called “LUPUS EUROPE catch-up”. The aim is to better keep in touch with our member groups throughout the year.

The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari Ødegård about the challenges and difficulties they face and about what they hope the future will bring.

Norway is a geographically difficult country, with lupus a small disease group. This makes it very difficult for members to stay in touch well and to meet up.

Some of the challenges they face include the lack of volunteers – a theme common to most member groups – and improving communication.

They are very enthusiastic about LUPUS EUROPE’s youth initiative and they hope that one day they can set up a youth group in Norway. They have also spread the word about the Kick Lupus campaign through instagram and are working on setting up a new, active Facebook page to better invigorate their group and its members.

You can get in touch with Kari at Lupus Norway with the following contact details:

Lupusgrupper i NRF

International contact :

Kari Ødegård

+47 913 291 81

Association address:

Steinhagen 55A
4100 Jorpeland
Norway

Tel.: +47 233 490 81
Email: lupus@revmatiker.org

___________________________________________________________

Next, it was Portugal’s turn for a “LUPUS EUROPE catch-up”. Katharine spoke to Rita  Mendes and Inês Ribeiro.

fotografia-16-02-17-14-29-3

This week the Portuguese Lupus group will be attending EULAR PARE – along with Sara Badreh from the board – so we chatted about what to expect and exchanged contact details for those attending.

Similar to the Norwegian group, the Portuguese group’s difficulties lie with funding and volunteers, especially volunteers with specific skills.

On the call Rita and Ines shared their hopes and thoughts, including some great ideas to move forwards together in the future. We will be looking into some of these in the very near future!

They are looking forward to being able to share their experiences and projects with other groups, both via the blog and the convention later in the year. We will be hearing more about one of those projects very soon – watch this space!

They are also very excited to have their very own lupus athlete and runner, Marisa, who is hoping to go to the European Masters Athletics to be held in Aarhus, Denmark in July. We will be sharing more of her story later on.

You can get in touch with the Portugese lupus group with the following details:

Associação de Doentes com Lupus
Maria Altiva Paula

Tel.: +35 121 330 36 40
Email: altivap@gmail.com

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
1 day ago
LUPUS EUROPE

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!
... See MoreSee Less

2 days ago
LUPUS EUROPE

‼️ 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

1 CommentComment on Facebook

What a great surprise to me that i was cured from herpes virus by a powerful herbal doctor, it was just like a dream to me i taught that their is no cure for herpes because for about six years i spent so much of my money in hospital but no improvement i was confused in life until a friend of mine introduces me to this herbal doctor i contacted Doctor ebhodaghe for his wonderful herbs medicine. You can also make your order for his wonderful herbs medicine by visiting his page www.facebook.com/Doctor-ebhodaghe-103821935782626/

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
1 week ago
LUPUS EUROPE

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 🙌
... See MoreSee Less

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 🙌

1 CommentComment on Facebook

It was a beautiful and interesting meeting.Thank you all.

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send