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 Rightly so, because there is a lot of outdated and sometimes completely wrong information on the internet.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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2 days ago
LUPUS EUROPE

#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

rarediseases.org/
... See MoreSee Less

#Lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #Europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website 

https://rarediseases.org/
2 days ago
LUPUS EUROPE

Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RAREDISEASES:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #RareDiseaseDay!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #Europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RareDiseases: 

1️⃣ There are more than 6000 identified rare diseases.

2️⃣  Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them. 
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop. 
The most serious complication of neonatal lupus is a heart condition known as congenital heart block. 

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life. 

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #RareDiseaseDay! 

#rarediseaseday2024  #ShareYourColoursImage attachmentImage attachment+2Image attachment
3 days ago
LUPUS EUROPE

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis... But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If you're living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: bit.ly/SLEStories_Danish
🇳🇱Dutch: bit.ly/SLEStories_Dutch2
🇬🇧English: buff.ly/3uExnRz
🇫🇮Finnish: bit.ly/SLEStories_Finnish
🇬🇷Greek: bit.ly/SLEStories_Greek
🇮🇸Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹Italian: bit.ly/SLEStories_Italian
🇱🇹Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱Polish: bit.ly/SLEStories_Polish
🇵🇹 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸Spanish: bit.ly/SLEStories_Spanish
🇸🇰Slovak: bit.ly/SLEStories_Slovak
🇫🇷French: buff.ly/3IfuJVf
🇩🇪German: buff.ly/3IfHf7e

Your story can lead to significant shifts in lupus care. Let's come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe.

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
... See MoreSee Less

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis...  But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #Lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If youre living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and  improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: https://bit.ly/SLEStories_Danish 
🇳🇱Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧English: https://buff.ly/3uExnRz 
🇫🇮Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷Greek: https://bit.ly/SLEStories_Greek
🇮🇸Icelandic: https://bit.ly/SLEStories_Icelandic
🇮🇹Italian: https://bit.ly/SLEStories_Italian
🇱🇹Lithuanian: https://bit.ly/SLEStories_Lithuanian
🇵🇱Polish: https://bit.ly/SLEStories_Polish
🇵🇹 Portuguese: https://bit.ly/SLEStories_Portuguese
🇪🇸Spanish: https://bit.ly/SLEStories_Spanish
🇸🇰Slovak: https://bit.ly/SLEStories_Slovak
🇫🇷French: https://buff.ly/3IfuJVf 
🇩🇪German: https://buff.ly/3IfHf7e 

Your story can lead to significant shifts in lupus care. Lets come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe. 

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
3 days ago
LUPUS EUROPE

🚨 Tomorrow is #RareDiseaseDay!

🙌 Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours

buff.ly/49NLliU
... See MoreSee Less

🚨 Tomorrow is #RareDiseaseDay!

🙌 Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours 

https://buff.ly/49NLliU
LUPUS EUROPE Uniting people with Lupus throughout Europe
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