Sunscreens survey

The European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. LUPUS EUROPE has been closely involved in this important project.

The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. This project was winner in the category “Leadership Community” of the Galderma SKIN PACT Award 2015. Detailed information on the study, its purpose and background are provided here: http://www.galdermaskinpact.org/winners/sunscreen/.

An online questionnaire for patients has been translated into 20 European languages. Patients with any type of systemic lupus can fill out the survey. You can go to the survey at this link and participate in this important project:

http://www.euscle.org/survey.

Please share the survey link to any lupus patients you know. The survey will be open until end of October 2016.

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Alain Cornet

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    LUPUS EUROPE
    22 hours ago
    LUPUS EUROPE

    🌟This December, we're embarking on a mission that holds the key to effective #lupus management.

    🤔 Can you crack the code and guess the theme that ties us together this month?

    Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

    🚀 Let the guessing game begin!

    #kicklupus     ... See MoreSee Less

    🌟This December, were embarking on a mission that holds the key to effective #lupus management. 🤔 Can you crack the code and guess the theme that ties us together this month? Stay tuned as we unveil the secret to a healthier, empowered lupus journey. 🚀 Let the guessing game begin! #KickLupus
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    How to try "tame the Wolf" or at least not let "Wolfie" run amock perhaps?

    LUPUS EUROPE
    2 days ago
    LUPUS EUROPE

    🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

    In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

    🔹 57.9% of respondents said SLE negatively affected their careers.
    🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
    🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

    🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

    🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

    #WorldDisabilityDay
    #IDPWD
    #InternationalDayOfPersonsWithDisabilities     ... See MoreSee Less

    🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities. In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have: 🔹 57.9% of respondents said SLE negatively affected their careers. 🔹 Nearly 50% faced challenges in daily activities, from studying to family life. 🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients. 🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus. 🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all. #WorldDisabilityDay #IDPWD #InternationalDayOfPersonsWithDisabilitiesImage attachmentImage attachment
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

    ⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

    🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

    💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

    #kicklupus by talking to your physician about vaccination and other prevention measures!     ... See MoreSee Less

    🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀. ⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications? 🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself. 💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control. #KickLupus by talking to your physician about vaccination and other prevention measures!Image attachment
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 buff.ly/3rUWfTt

    🙌 This month, we talk about prevention to #KickLupus     ... See MoreSee Less

    🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 https://buff.ly/3rUWfTt 🙌 This month, we talk about prevention to #KickLupus
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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