Sandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been endorsed by ERN ReCONNET SLE Working Group doctors. Below is a piece Sandra wrote on the need for Lupus100, the translation validation process and some wonderful feedback on the website! 

 

New website answers 100 questions about lupus

 

When we have questions about our disease, we lupus sufferers are often advised: “Don’t Google!” Rightly so, because there is a lot of outdated and sometimes completely wrong information on the internet. There are also some scientific websites that provide correct information. But these are difficult to understand because the texts are full of technical terms. Lupus Europe has wanted to solve this problem for many years and now the project has finally been realised. Lupus Europe has launched Lupus100 (www.lupus100.org). Lupus100 answers 100 important questions about lupus in now thirteen languages (including German). More languages are to be added by the end of the year.

 

How the Lupus100 website was created

 

I was involved in the creation of the German site and would like to give you a little insight into how the website came about. The project is based on a French book called “Lupus in 100 Questions”. This book has been around for many years and is very popular in France. An English version was first created from the book, for which members of the Lupus Europe Patient Advisory Network (PAN) worked together with doctors specialising in lupus. A number of France-specific questions were removed and replaced with internationally relevant questions, suggested by PAN members and answered together with the lupus experts.

All 100 questions and answers in the English version were reviewed and feedback incorporated by doctors from the Lupus Working Group of the European Reference Network for Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) and lupus patients from the Lupus Europe PAN network. Lupus Europe translated the resulting English version into many different languages, including German, using an automated translation tool called Deepl Pro. For each language, they created a Word document containing the original English text and the European language draft machine translation side by side. This text was then sent to volunteer lupus patients and lupologists from each country, who corrected the automatic translation.

 

This is where my task began. I had agreed to review the German translation from the patient’s point of view. The suggestion from Lupus Europe was that first the people with lupus and then the doctors improve the texts. So directly after an online meeting in autumn 2022, where we were given background information and a short manual, I sat down to check the approximately 170 Word pages. The automatic translation was surprisingly good because the Pro version was used instead of the normal Deepl. Nevertheless, there was still a lot to be improved. Sometimes the wording sounded bumpy, sometimes the words were translated so inappropriately that a completely different meaning emerged in the German sentence.

 

When I had finished after a few weeks, I sent the document with my comments to three doctors from the University Hospital in Düsseldorf: Dr Chehab, Dr Düsing and Dr Mucke. They divided the document into three parts and also added their improvements. After a few arrangements, we sent the finished document back to Lupus Europe at the end of 2022, who were very grateful for our work. During the spring, the 100 German questions and answers were put on the website and we were able to finalise the online version. The public announcement of the multilingual website www.lupus100.org took place on World Lupus Day on 10 May. For me it was a great moment to see this joint project of so many volunteers from all over Europe online.

 

Good feedback for Lupus100

 

The website has since received a lot of praise. Jeanette Andersen, Chair of Lupus Europe, added that not only sufferers but also doctors find the website useful. Personally, I also find the selection of questions very successful. Many are very practical and I have learned a lot. For example, I didn’t know why people with lupus shouldn’t take ibuprofen. The answer is under the question “What drugs should be avoided in lupus?” and is: “A non-steroidal anti-inflammatory drug (NSAID) called ibuprofen can sometimes cause severe headaches very quickly and sometimes even “chemical” meningitis (without microbes), especially in lupus patients. This drug, which is available over the counter, is therefore contraindicated in your case.”

Also, I thought until now that lupus sufferers would notice it after a few days at the latest if they got too much sun. But under the question “Can I sunbathe with lupus?” I surprisingly read: “Sun exposure can also cause a relapse of the disease and the appearance of other symptoms such as joint complaints, tiredness and possibly more severe damage. These symptoms often occur several weeks or even months after sun exposure. Lupus flare-ups are therefore more common in autumn and early winter. The time lag between sun exposure and the onset of the lupus flare explains why the patient often sees no connection between these two manifestations.”

I am sure that the vast majority of lupus sufferers can still discover surprising new information at www.lupus100.org. And the great thing is: we don’t have to question the credibility of the website, but can be sure that the texts have been checked by several lupus experts.

Text by Sandra Schaftner


And the original piece Sandra wrote in German: 

 

Neue Internetseite beantwortet 100 Fragen über Lupus

Wenn wir Fragen zu unserer Krankheit haben, wird uns Lupus-Erkrankten häufig geraten: „Nicht googeln!“ Zurecht, denn im Internet finden sich viel e veraltete und teils auch komplett falsche Informationen. Es gibt auch einige wissenschaftliche Internetseiten, die richtige Informationen liefern. Diese sind aber schwierig zu verstehen, weil die Texte voller Fachwörter sind.

 

Dieses Problem wollte die europäische Lupus-Dachorganisation Lupus Europe seit vielen Jahren lösen und nun konnte das Projekt endlich umgesetzt werden. Lupus Europe hat die Internetseite www.lupus100.org ins Leben gerufen, die 100 wichtige Fragen über Lupus in mittlerweile zwölf Sprachen (auch auf Deutsch) beantwortet. Bis Jahresende sollen noch mehr Sprachen hinzukommen.

 

So entstand die Internetseite

 

Ich war bei der Erstellung der deutschen Seite beteiligt und möchte euch hier einen kleinen Einblick geben, wie die Internetseite entstand. Sie basiert auf einem französischen Buch, das „Lupus in 100 Fragen“ heißt. Dieses gibt es schon seit vielen Jahren und es ist in Frankreich sehr beliebt. Aus dem Buch wurde zunächst eine englische Version erstellt, wofür Mitglieder einer Lupus-Europe-Gruppe namens Patient Advisory Network (PAN) mit auf Lupus spezialisierten Ärztinnen und Ärzten zusammenarbeiteten. Einige Frankreich-spezifische Fragen wurden entfernt und durch international relevante Fragen ersetzt, die PAN-Mitglieder vorschlugen und gemeinsam mit den Lupus-Experten beantworteten.

 

Alle 100 Fragen und Antworten der englischen Version wurden von Ärztinnen und Ärzten aus der Lupus-Arbeitsgruppe des Europäischen Referenznetzwerks für Bindegewebs- und muskuloskelettale Erkrankungen (ERN ReCONNET) und Lupus-Erkrankten aus dem PAN-Netzwerk geprüft und deren Feedback eingearbeitet. Die daraus entstandene englische Version übersetzte Lupus Europe mit einem automatischen Übersetzungstool namens Deepl Pro in viele verschiedene Sprachen, unter anderem auch ins Deutsche. Für jede Sprache erstellten sie ein Word-Dokument, das nebeneinander den englischen Originaltext und die deutsche Maschinenübersetzung enthielt, und schickten es an freiwillige Lupus-Erkrankte und Ärztinnen und Ärzte aus den jeweiligen Ländern, die die automatische Übersetzung korrigierten.

 

An dieser Stelle begann meine Aufgabe. Ich hatte mich bereiterklärt, die deutsche Übersetzung aus Patientensicht zu überprüfen. Der Vorschlag von Lupus Europe war, dass zuerst die Lupus-Erkrankten und anschließend die Ärztinnen und Ärzte die Texte verbessern. Also setzte ich mich direkt nach einem Online-Treffen im Herbst 2022, bei dem wir Hintergrundinformationen und eine kurze Anleitung bekamen, an die circa 170 Word-Seiten, die es zu prüfen galt. Die automatische Übersetzung war erstaunlich gut, weil nicht das normale Deepl, sondern die Pro-Version verwendet wurde. Trotzdem gab es noch viel auszubessern. Mal hörte sich die Formulierung holprig an, mal waren die Wörter so unpassend übersetzt, dass sich im deutschen Satz ein ganz anderer Sinn ergab.

 

Als ich nach ein paar Wochen damit fertig war, schickte ich das Dokument mit meinen Anmerkungen an drei Ärztinnen und Ärzte vom Uniklinikum Düsseldorf, Dr. Chehab, Dr. Düsing und Dr. Mucke. Sie teilten das Dokument in drei Teile und fügten ebenfalls ihre Verbesserungen hinzu. Nach ein paar Absprachen schickten wir das fertige Dokument Ende 2022 zurück an Lupus Europe, die sich sehr für unsere Arbeit bedankten. Im Laufe des Frühlings wurden die 100 deutschen Fragen und Antworten auf die Internetseite gestellt und wir konnten die Onlineversion final prüfen. Die öffentliche Ankündigung der mehrsprachigen Internetseite www.lupus100.org fand zum Welt-Lupus-Tag am 10. Mai statt. Für mich war es ein toller Moment, dieses Gemeinschaftsprojekt so vieler Freiwilliger aus ganz Europa online zu sehen.

 

Gutes Feedback für Lupus100

 

Die Internetseite erhielt seitdem viel Lob. Jeanette Andersen, die Vorsitzende von Lupus Europe, ergänzte, dass nicht nur Erkrankte, sondern auch Ärztinnen und Ärzte die Internetseite nützlich finden. Ich persönlich finde vor allem auch die Auswahl der Fragen sehr gelungen. Viele sind sehr praxisnah und ich habe Einiges dazugelernt. Beispielsweise wusste ich bisher nicht, warum Lupus-Erkrankte kein Ibuprofen nehmen sollten. Die Antwort darauf steht unter der Frage „Welche Medikamente sollten bei Lupus vermieden werden?“ und lautet: „Ein nichtsteroidales Antirheumatikum (NSAR) namens Ibuprofen kann manchmal sehr schnell starke Kopfschmerzen und manchmal sogar eine “chemische” Meningitis (ohne Mikroben) auslösen, insbesondere bei Lupuspatienten. Dieses Medikament, das rezeptfrei erhältlich ist, ist daher in Ihrem Fall kontraindiziert.“

 

Außerdem dachte ich bisher, dass Lupus-Erkrankte es spätestens nach ein paar Tagen bemerken, wenn sie zu viel Sonne abbekommen haben. Doch unter der Frage „Kann ich mit Lupus ein Sonnenbad nehmen?“ las ich überraschenderweise: „Sonneneinstrahlung kann auch einen Rückfall der Krankheit und das Auftreten anderer Symptome wie Gelenkbeschwerden, Müdigkeit und möglicherweise schwerere Schäden verursachen. Diese Erscheinungen treten oft erst mehrere Wochen oder sogar Monate nach der Sonnenexposition auf. Lupusschübe treten daher häufiger im Herbst und frühen Winter auf. Der zeitliche Abstand zwischen der Sonnenexposition und dem Ausbruch des Lupusschubs erklärt, warum der Patient oft keinen Zusammenhang zwischen diesen beiden Erscheinungen sieht.“

 

Ich bin mir sicher, dass die allermeisten Lupus-Erkrankten noch überraschende neue Informationen bei www.lupus100.org entdecken können. Und das Tolle ist: Wir müssen die Glaubwürdigkeit der Internetseite nicht hinterfragen, sondern können uns sicher sein, dass die Texte von mehreren Lupus-Experten überprüft wurden.

 

Text von Sandra Schaftner

 

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4 hours ago

✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/

🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
... See MoreSee Less

✅ Yes! As many of you guessed, the October theme of the #KickLupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #KickLupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

https://lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #LupusGPT in your preferred language! https://lupusgpt.org/

🇩🇰 https://lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 https://lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 https://lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 https://lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 https://www.rhumatismes.net/index.php?id_q=863
🇮🇹 https://lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 https://lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 https://lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 https://lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 https://lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 https://lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupusImage attachmentImage attachment+7Image attachment

1 CommentComment on Facebook

Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus

4 days ago

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan  and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care.

https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
6 days ago

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health!
... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!

3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

1 week ago

🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay
... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Dont smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDayImage attachment

1 CommentComment on Facebook

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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