Annemarie Sluijmers

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    LUPUS EUROPE
    3 hours ago
    LUPUS EUROPE

    😨 Did you miss our #EULAR2025 debrief webinar?

    😮‍💨 Don't worry! You can watch the full session at your convenience.

    Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

    www.facebook.com/LupusEurope/videos/1257813502412444     ... See MoreSee Less

    😨 Did you miss our #EULAR2025 debrief webinar? 😮‍💨 Dont worry! You can watch the full session at your convenience. Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page! https://www.facebook.com/LupusEurope/videos/1257813502412444
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    LUPUS EUROPE
    3 days ago
    LUPUS EUROPE

    ‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

    😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

    💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

    🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

    The need to stay covered and protected from the sun can make these jobs particularly challenging.

    🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

    Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

    This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

    For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

    🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

    😊 Share your experiences and how you #KickLupus & UV light in your daily life     ... See MoreSee Less

    ‼️ According to our Living with Lupus in 2020 survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus. 😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many. 💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples: 🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms. The need to stay covered and protected from the sun can make these jobs particularly challenging. 🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus. Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection. This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment. For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities. 🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun. 😊 Share your experiences and how you #KickLupus & UV light in your daily lifeImage attachment
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    LUPUS EUROPE
    6 days ago
    LUPUS EUROPE

    🟣 Phase 2 of LUPUS-ALERT is now complete!

    Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

    🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

    🔷 Associated conditions
    🔷 Comorbidities
    🔷 Social and economic context
    🔷 Challenges and barriers — like language, access to medication, or distance to care

    🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

    💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

    📌 Stay tuned — more to come soon!     ... See MoreSee Less

    🟣 Phase 2 of LUPUS-ALERT is now complete! Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care. 🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management: 🔷 Associated conditions 🔷 Comorbidities 🔷 Social and economic context 🔷 Challenges and barriers — like language, access to medication, or distance to care 🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care. 💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process! 📌 Stay tuned — more to come soon!
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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    🌟Thank you to all who attended our #EULAR2025 debrief webinar!

    🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

    Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/     ... See MoreSee Less

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