Friends

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
3 days ago

ℹ️ We are currently implementing exciting upgrades to LupusGPT and EasyLupus to enhance your experience.

Both platforms will be back online and available in less than 24 hours
... See MoreSee Less

ℹ️ We are currently implementing exciting upgrades to LupusGPT and EasyLupus to enhance your experience.

Both platforms will be back online and available in less than 24 hours
3 days ago

📆 New month, new challenge!

🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

🤔 Can you guess what this month's theme is all about?

💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

And remember! You can check #lupusgpt, #easylupus, and #Lupus100 for answers to any questions you may have about lupus in most European languages.

i.mtrbio.com/kthdqsitpf

i.mtrbio.com/ozxikfqllo

i.mtrbio.com/pspsuhhuzc

Ready to embark on this journey with us? 💪
... See MoreSee Less

📆  New month, new challenge!

🍁 As the calendar flips to November, our #KickLupus campaign has a new theme!

🤔 Can you guess what this months theme is all about?

💡 Hint: Its all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

And remember! You can check #LupusGPT, #EasyLupus, and #Lupus100 for answers to any questions you may have about lupus in most European languages.

https://i.mtrbio.com/kthdqsitpf

https://i.mtrbio.com/ozxikfqllo

https://i.mtrbio.com/pspsuhhuzc

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

Men with lupus

5 days ago

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
7 days ago

😍 What an Incredible Lupus Europe Convention!

This year's #LupusConvention in Slovakia has been an unforgettable experience, packed with insightful talks, interactive sessions, and the chance to reconnect with friends and colleagues from across Europe and meet new friends.

🧠 Day 1 started with Jeanette Andersen opening the event with a heartfelt tribute to our beloved Yvonne Norton, in whose honour we created the Yvonne Norton Grant to support lupus patients who have made a positive impact but might not have the means to attend the convention. Then, we moved on to a keynote address from Dr. Chris Wincup, who shared valuable insights on #NPSLE and also on #MentalHealth in #SLE, followed by a lively Q&A. We also participated in hands-on workshops and a fun game around the city of Bratislava to explore Lupus Europe's strategic plan and get feedback from national delegates as well as ideas for the organisation's strategic plans of action.

💬 Day 2 continued with an engaging "Meet the Doctor" session featuring Dr. Chris Wincup and Dr. Luca Moroni, where delegates had the opportunity to ask their questions. From mental health first aid training to discussions on sex, diversity, and patient testimonies, the second day offered a range of enriching experiences and workshops.

🏃‍♂️ Day 3 wrapped things up with a focus on how to grow collaboration, led by Alain Cornet, leaving us all feeling inspired and ready to take action!

A huge thank you to everyone for making this convention a success. We look forward to the incredible work ahead, together!

🎁 A highlight of the event was receiving thoughtful handmade gifts from Lupus Klub Motýlik (Lupus Slovakia) and other members—thank you all for these beautiful creations!

🏞️ Plus, we had an energising Nordic Walk thanks to the Slovak Nordic Walking Association.

💜 A special mention to Pilar Álvarez, from Lupus Cadiz -ALCA - (member of Felupus), our Yvonne Norton Grant recipient. It has been a true pleasure to have you with us at the #LupusConvention, and we hope you enjoyed the experience as much as we did!
... See MoreSee Less

😍 What an Incredible Lupus Europe Convention!

This years #LupusConvention in Slovakia has been an unforgettable experience, packed with insightful talks, interactive sessions, and the chance to reconnect with friends and colleagues from across Europe and meet new friends.

🧠 Day 1 started with Jeanette Andersen opening the event with a heartfelt tribute to our beloved Yvonne Norton, in whose honour we created the Yvonne Norton Grant to support lupus patients who have made a positive impact but might not have the means to attend the convention. Then, we moved on to a keynote address from Dr. Chris Wincup, who shared valuable insights on #NPSLE and also on #MentalHealth in #SLE, followed by a lively Q&A. We also participated in hands-on workshops and a fun game around the city of Bratislava to explore Lupus Europes strategic plan and get feedback from national delegates as well as ideas for the organisations strategic plans of action.

💬 Day 2 continued with an engaging Meet the Doctor session featuring Dr. Chris Wincup and Dr. Luca Moroni, where delegates had the opportunity to ask their questions. From mental health first aid training to discussions on sex, diversity, and patient testimonies, the second day offered a range of enriching experiences and workshops.

🏃‍♂️ Day 3 wrapped things up with a focus on how to grow collaboration, led by Alain Cornet, leaving us all feeling inspired and ready to take action!

A huge thank you to everyone for making this convention a success. We look forward to the incredible work ahead, together!

🎁 A highlight of the event was receiving thoughtful handmade gifts from Lupus Klub Motýlik (Lupus Slovakia) and other members—thank you all for these beautiful creations!

🏞️ Plus, we had an energising Nordic Walk thanks to the Slovak Nordic Walking Association.

💜 A special mention to Pilar Álvarez, from Lupus Cadiz -ALCA - (member of Felupus), our Yvonne Norton Grant recipient. It has been a true pleasure to have you with us at the #LupusConvention, and we hope you enjoyed the experience as much as we did!Image attachmentImage attachment+7Image attachment

2 CommentsComment on Facebook

Mange tak for dette overblik 😊 Er det muligt at referere lidt mere vedr. NPSLE og det mentale helbred?

Lupus UK