On World Lupus Day, @lupusreference discusses the unmet need of fatigue in #Lupus and how understanding it can lead to better management strategies.
#WorldLupusDay
#DiaMundialDelLupus
❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.
However, there's something 🗝️that we also need to show.
🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life
It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's 🔝dangerous & frequent complications.
Routine checkups➕available treatments make it possible for 60–70% of patients to achieve complete or partial remission
#WorldLupusDay
#Lupus100
Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100
🌟 A heartfelt thank you to everyone who joined us for the "Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist" webinar on #WorldLupusDay!
Your participation made this event a meaningful and enlightening experience.
“Living with #lupus isn’t always visible, but the impact is real.” Meet @AnnemarieS66, battling Systemic Lupus Erythematosus with grace despite facing misconceptions. On #WorldLupusDay, let's shed light on her story and #MakeLupusVisible. 🎥 https://bcove.video/3QzkGPk
🚨 In less than an hour!!!
😃 Don't miss this unique opportunity to learn what young people with lupus need to talk about!
‼️ Also, on Facebook Live!
https://www.facebook.com/LupusEurope
#WorldLupusDay
To celebrate World Lupus Day 🦋
📢 We are calling all patients with SLE
Your voice matters! 🗣️
👉 Participate in our LUPPOS survey to help us better understand your attitudes towards steroids used in SLE treatment.
Thank you @LupusEurope and @GruppoLes for your collaboration!
🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗
📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.
🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.
🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.
‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.
✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.
🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.
🌐 Available in 21 Languages:
🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
🇩🇰 Danish s.surveylegend.com/-NqmjTjyUXHGLMmAu5qS
🇩🇪 German s.surveylegend.com/-Nr0_sVBruuAHJTsHkuE
🇬🇷 Greek s.surveylegend.com/-Nr5KNkcBGDrsYl1F1xG
🇪🇸 Spanish s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs
🇬🇧 English s.surveylegend.com/-NqgyR5b7jLpCyBwEssv
🇪🇪 Estonian s.surveylegend.com/-Nt145Q5s02kLYdspFDs
🇫🇷 French s.surveylegend.com/-NrWK4Io8HFYwgd_JF9W
🇮🇹 Italian s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0
🇳🇴 Norwegian s.surveylegend.com/-NrQBaJNQ4HcwZblYzh5
🇱🇹 Lithuanian s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
🇳🇱 Dutch s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
🇵🇱 Polish s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP
🇷🇴 Romanian s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
Russian s.surveylegend.com/-NtkhreGgEglDg9AeMfH
🇸🇮 Slovenian s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
🇫🇮 Finnish s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
🇺🇦 Ukrainian s.surveylegend.com/-Nt1t0lpqlsn9jRPHe-3
🇧🇬 Bulgarian s.surveylegend.com/-NuOC4mQDrt8udTrqS85
🇵🇹 Portuguese s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi
🇭🇺 Hungarian s.surveylegend.com/-Nucu0zQ8je0kzInRWb8
0 CommentsComment on Facebook
‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.
⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.
✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.
🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.
🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.
🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
1 CommentsComment on Facebook
♦️ Few days left to fill the Living With Lupus in 2024 survey!
✍🏻 Izpolnite anketo.
🔊 Delite z vašo skupnostjo.
🙏 Help us achieve more answers to ensure the Slovak population is represented in the results
s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
#lupusawarenessmonth
0 CommentsComment on Facebook
🦋 #WorldLupusDay is coming to an end!
❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.
🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.
🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.
🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.
🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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Stalo
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