Online Survey 2010
Survey II Living with Lupus: Career / Work Situation

The response of the 2009’s survey was clear: Lupus has been a life changing experience with the most highly significant affect on career.
A surprising statement, but yet not at all that big of surprise when you think about it. 
Lupus is most often diagnosed when the woman is up to 45 years of age. This means the time of your life, when you study to find your field of expertise and/or are in the midst of establishing a family. Career change.

But how and perhaps why?

We needed to investigate this further and prepared a new survey: with the specific aim to check whether having lupus means career change and how. We have been fortunate to be able to combine the parts of the survey with validated questionnaires on Fatigue, Work Impact and Lupus Quality of Life.

It is the first time all these aspects are combined.
Nevertheless, it is the first time an on-line survey addresses any person in Europe with lupus to give the individual reply to the situation of impact of lupus to career.

The survey was in five languages – English, French, German, Spanish and Italian:

The Clinical Advisory Group for the survey includes Professor Matthias Schneider, Professor David Isenberg and Professor Caroline Gordon from the LUPUS EUROPE Medical Advisory Panel.

Kirsten Lerstrøm is the Project Leader from LUPUS EUROPE working closely with the Trustees and the contacts of the five member countries providing the language translation.

The abstract “Impact of systemic lupus erythematosus on patients’ employment, family relationships, and overall well-being” submitted to EULAR was accepted as poster presentation for EULAR 2010 in Rome.

The methodology of the survey was presented during the 9th International SLE Congress at Vancouver and at the LUPUS EUROPE Annual Convention in Budapest in September 2010.

During 2011, the results will be presented at key European scientific lupus events and in 2013, it was published under the name Lupus European Online – LEO, and is available online. Please click on the link to access the full article : http://rheumatology.oxfordjournals.org/content/early/2013/09/18/rheumatology.ket300.full

THE RESULTS

2188 responses in total

English version – 596 responses (97,6% with lupus)
German version – 638 responses (98,9% with lupus)
French version – 215 responses (94,1% with lupus)
Italian version – 405 responses (98,1% with lupus)
Spanish version – 334 responses (97,1% with lupus)

Responses from “Other” (countries) only 6,4%

An amazing result!

The survey has been presented at the key events 2011 – European Lupus Meeting in Porto April 6-9 and at EULAR Congress 2011, London, May 25-28, and presented as poster during the DGRh congress in Munich, Germany, from August 31 – September 3, 2011

ONLINE PUBLICATIONS

MediLexicon – May 27, 2011
Hospital Pharmacy Europe – May 27, 2011
MediLexicon – May 29, 2011

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2 hours ago

😨 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
3 days ago

‼️ 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
6 days ago

🟣 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!
1 week ago

🌟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