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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11 hours ago
LUPUS EUROPE

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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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12 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

www.facebook.com/LupusEurope
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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
21 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.

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Not succeeding to send an email for registration. I would like to participate. Thanks

Bonjour, en quelle langue sera la webinaire s'il vous plaît

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1 day ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
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Grazie

💜💜💜