Welcome 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 organisation is doing, the needs of lupus patients in Israel,  lupus and sun sensitivity and much more!

 

How do you keep in touch with or have contact with your members?

 

Most of the time we keep in touch through whatsapp and facebook. We have two facebook groups for lupus specifically; one of those groups has over 1500 members and the other one around 1000 members. Sharon moderates one of the groups and does a very good job of it!

 

Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?

 

Absolutely! We run webinars 3 times a year on lupus specifically and we did that last year too. In the past year we also had webinars on covid19.  We regularly also run webinars about rheumatic diseases in general.

 

We have to say that within our organisation, INBAR, we also have a group about scleroderma, as a rare disease, and this is building up at the moment. Another group within our organisation that we also have is a group on Familial Mediterranean Fever (FMF). We therefore regularly run webinars on those conditions too and many others!

 

Has it been difficult to keep connected with your members during the Covid19 pandemic?

 

Most of our members have been home during the pandemic. It wasn’t very hard to have a connection with our members during the pandemic. We used Zoom, Facebook and whatsapp and connected regularly with our members through those mediums; it wasn’t hard at all to stay connected.

 

We also have e-mails for all of our members and we regularly connect with our members through e-mails as well.

 

During the pandemic we established two lupus specific support groups; they are divided according to age, one is for over 45s for example. We run the support groups over zoom. Both support groups meet weekly for 12 weeks and after those 12 weeks they have monthly meetings. Th

 

Have there been any circumstances during the pandemic that changed the way of living with lupus?

 

 Yes, absolutely. One big difference that naturally came about with the pandemic is that everyone is much more helpful. People are also more reluctant to leave their houses and the pandemic made things that much more difficult for everybody in that way. People with autoimmune conditions like lupus were a lot more careful during the pandemic. We, as an organisation, warned people many times to protect themselves against covid and be careful because it can be very difficult if lupus patients catch covid19. People were scared for a long time, but now everything seems to be settling down and restrictions easing.

 

We have had a lot of questions come to us about vaccination against covid. In fact, people still have questions. We had a webinar on vaccination specifically, one of the professors spoke and said it’s important for everyone to have the vaccine. He also able to advise about specific medication and the vaccine and encouraged people to ask their own doctor about the vaccine. We have found that most lupus patients that are INBAR members have taken the vaccine.

 

Has Digital Health improved or changed in your country?

 

Yes! Digital health has changed over the past few years, it has greatly improved. We are connected to our national health service now and we can receive the results of tests online for example! Patients also have the choice to communicate with their doctors by phone or by zoom or in person. Electronic prescriptions are also available, and they are widely used. Everything has changed, and we think this will be maintained in the future, as the systems are there now to accommodate these changes. 

 

What would you most need as support in your country for lupus?

 

Although things have improved greatly in the last few years, we always appreciate receiving all the latest news and updates. We believe the synergy of working together is very important. Working together is so much better than each organisation and each country working alone.

 

Is there anything you think Lupus Europe could help your organisation with?  

 

We are a very diverse country in terms of the languages spoken here. Everyone speaks Hebrew, though not everyone speaks it fluently, and a lot of people speak English, Arabic or French. We would be very happy if there could be translations of important documents about lupus and information on lupus in Hebrew. It would be of important benefit to us and our members if we could receive some information in Hebrew. 

 

Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?

Yes, we would want a central database of information to be created that could be open to all members, like a library of information. Each member could contribute and be able to access information through this library.

 

We would be very keen to have Lupus Europe focus on issues like sun sensitivity of lupus patients and also pollution, as we believe pollution is involved in autoimmunity and lupus.

 

Are you aware of the Lupus Europe Member Capacity Building Program?

 

No! But now we are! 

 

Could you tell us a bit about a dream you have as a group?

 

The dream of our group is that everybody will be healthy. We know that this is impossible, but an important dream for us is for everyone to be in remission.  We believe this to be possible and we hope a lot more new medication will be available in the future for lupus and for other autoimmune diseases.

 

 

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2 weeks ago
LUPUS EUROPE

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #kicklupus with prevention?
... See MoreSee Less

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

🗣️ Your Voice Matters!

We want to hear from YOU!

❓ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! 💎

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

✍️ You can answer in English or in your own language.

Ready to share your thoughts?

🔗 Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

🤗 Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! 💪
... See MoreSee Less

1 CommentComment on Facebook

🤷‍♂️

4 weeks ago
LUPUS EUROPE

📆 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.

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. 

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

💪🏻🍀

1 month ago
LUPUS EUROPE

‼️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
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