Hello! My name is Ida, and I’m here to share my incredible journey through the EUPATI Open Classroom, an initiative by the European Patients’ Academy of Therapeutic Innovation (EUPATI). For me, EUPATI training was a ride filled with challenges, dedication, and a newfound understanding of the medical world.

 

Let me be honest; diving into the EUPATI Open Classroom was challenging. It demanded time, effort, and a willingness to embrace a whole new language – the language of medical research. The EUPATI course required substantial dedication. It wasn’t just about reading materials or participating in online events; it was about immersing yourself in an entirely new realm of knowledge. Picture this: medical jargon, complex terms, and a professional language that doctors and researchers use daily.

 

As I familiarised myself with this new language, I found myself understanding the world of medical research better. Suddenly, concepts that once seemed foreign became clear, and the importance of learning more about research for my work as a Patient Advisory Member (PAN) for Lupus Europe became undeniable. Learning these intricacies not only enhanced my knowledge, but also deepened my motivation.

 

My EUPATI story didn’t unfold smoothly; health issues threw a wrench into my plans. But here’s where EUPATI stood out – their understanding and support were great. When I couldn’t complete the course in one year due to health concerns, they allowed me to postpone. I now have two modules left, the final training, and the final test. With the support of EUPATI, I am continuing my journey. Slowly but steadily, I will earn my last credits, absorb new knowledge, and prepare for the final face-to-face training and test.

 

In hindsight, despite the challenges, I can confidently say it is worth it. The EUPATI Open Classroom has already transformed me. Yes, it demands focus, dedication, and countless hours of learning, but the rewards are immeasurable. So, to all of you out there considering this journey, here is my advice: be prepared to invest your time and energy. Embrace the difficulties, because on the other side, there is a world of understanding waiting for you. The EUPATI Open Classroom might not be easy, but it is undeniably transformative. It’s a unique opportunity to empower yourself, to comprehend the intricacies of medical research, and to contribute meaningfully to the betterment of patient experiences worldwide.

 

With determination and the right support, you can conquer the challenges and emerge stronger, wiser, and more empowered than ever before. Here’s to your journey of discovery and enlightenment at the EUPATI Open Classroom!

 

By Ida Daiva Povilaite, Lupus Europe PAN and Board Member

 

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2 weeks ago
LUPUS EUROPE

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ.

๐Ÿ” 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.

๐Ÿค” So, how can we #kicklupus with prevention?
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๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ. 

๐Ÿ” 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.

๐Ÿค” So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

๐ŸŒŸ Calling all Lupus Patient Organisation Volunteers! ๐ŸŒŸ

๐Ÿ—ฃ๏ธ Your Voice Matters!

We want to hear from YOU!

โ“ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! ๐Ÿ’Ž

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.

โœ๏ธ You can answer in English or in your own language.

Ready to share your thoughts?

๐Ÿ”— Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

๐Ÿค— Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! ๐Ÿ’ช
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1 CommentComment on Facebook

๐Ÿคท‍โ™‚๏ธ

4 weeks ago
LUPUS EUROPE

๐Ÿ“† New month, new challenge!

๐Ÿ As the calendar flips to November, our #kicklupus campaign has a new theme!

๐Ÿค” Can you guess what this month's theme is all about?

๐Ÿ’ก Hint: It's all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ 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? ๐Ÿ’ช
... See MoreSee Less

๐Ÿ“†  New month, new challenge!

๐Ÿ As the calendar flips to November, our #KickLupus campaign has a new theme! 

๐Ÿค” Can you guess what this months theme is all about?

๐Ÿ’ก Hint: Its all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ 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? ๐Ÿ’ช

1 CommentComment on Facebook

๐Ÿ’ช๐Ÿป๐Ÿ€

1 month ago
LUPUS EUROPE

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLet's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

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

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

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… 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.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients can't receive live vaccines

โœ… 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.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

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

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… 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.

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… 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

๐ŸŒ 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

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

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

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

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… 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.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients cant receive live vaccines

โœ… 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.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

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

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… 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. 

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… 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 

๐ŸŒ 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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