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 Rightly so, because there is a lot of outdated and sometimes completely wrong information on the internet.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

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, let's delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, there's great news on the horizon. Lupus Europe, through the #kicklupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Let's embark on this journey together towards better health and well-being.

For more information, follow the link below and don't forget to share your progress and motivate each other with the hashtag #kicklupus. 📷💪

Let's kick lupus together! 👊🦋

www.lupus-europe.org/me-lupus/
... See MoreSee Less

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, lets delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, theres great news on the horizon. Lupus Europe, through the #KickLupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Lets embark on this journey together towards better health and well-being.

For more information, follow the link below and dont forget to share your progress and motivate each other with the hashtag #KickLupus. 📷💪

Lets kick lupus together! 👊🦋

https://www.lupus-europe.org/me-lupus/Image attachmentImage attachment+3Image attachment
5 days ago

🎥 What makes #LupusGPT different? Watch this video to find out!

🌟 Unlike other AI tools, #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝗴𝘂𝗮𝗿𝗮𝗻𝘁𝗲𝗲𝘀 𝗮𝗰𝗰𝘂𝗿𝗮𝗰𝘆 𝗮𝗻𝗱 𝘁𝗿𝗮𝗻𝘀𝗽𝗮𝗿𝗲𝗻𝗰𝘆. Here’s how:

✅ Every response is based on a 𝗿𝗶𝗴𝗼𝗿𝗼𝘂𝘀𝗹𝘆 𝗰𝘂𝗿𝗮𝘁𝗲𝗱 𝗿𝗲𝗽𝗼𝘀𝗶𝘁𝗼𝗿𝘆 𝗼𝗳 𝘀𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 𝗱𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝘀, including the latest EULAR recommendations and the #Lupus100 website.

#𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝘄𝗶𝗹𝗹 not 𝗺𝗮𝗸𝗲 𝘂𝗽 𝗮𝗻𝘀𝘄𝗲𝗿s. If the information isn’t available in its database, it will honestly let you know.

🔍 Our database is regularly updated with verified information to expand its knowledge and utility.

🤖 Challenge #LupusGPT with your toughest lupus questions and experience its precision and accuracy, and let us know your thoughts. Your feedback is very valuable to us!

Visit now s.mtrbio.com/rftoeqgutq and get 🤯 by this amazing tool.

And remember! Although #LupusGPT is designed to provide valid information and be a valuable resource, 𝗻𝗼 𝘁𝗼𝗼𝗹 𝗰𝗮𝗻 𝗿𝗲𝗽𝗹𝗮𝗰𝗲 𝘆𝗼𝘂𝗿 𝗽𝗵𝘆𝘀𝗶𝗰𝗶𝗮𝗻.
... See MoreSee Less

1 week ago

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #kicklupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether it's a gentle stroll, a 🧘‍♀️session, or any other activity, let's motivate each other by sharing pictures of our workouts with #kicklupus
... See MoreSee Less

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #KickLupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether its a gentle stroll, a 🧘‍♀️session, or any other activity, lets motivate each other by sharing pictures of our workouts with #KickLupusImage attachmentImage attachment
1 week ago

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, we've discussed how to #kicklupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, we're diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the study's limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, it's crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!
... See MoreSee Less

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, weve discussed how to #KickLupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, were diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the studys limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, its crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!Image attachmentImage attachment
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