Lupus 100
Lupus hakkında en sık sorulan 100 soruya, önde gelen lupus doktorları tarafından hastalarla iş birliği içinde hazırlanmış güvenilir ve kaliteli yanıtlar bulun.
Lupus 100
Lupus hakkında en sık sorulan 100 soruya, önde gelen lupus doktorları tarafından hastalarla iş birliği içinde hazırlanmış güvenilir ve kaliteli yanıtlar bulun.
Lupus Hakkında Sorulacak 100 Soru
Lupus hastaları ve onların yakınları, hemşireler, tıp öğrencileri ve hatta uzman olmayan doktorlar düzenli olarak çok karmaşık bir hastalık olan lupus hakkında sorularla karşı karşıya kalmaktadır. Bazı insanlar doğrulanmış bilgilere erişebilirken, çok sayıda kişi "kulaktan kulağa", yani kontrolsüz bilgiler ile kafa karışıklıklarının artacağı, endişe yaratacağı ve doğru olmayan tedavilere yönelebileceği bilinmektedir.
2010 yılında, Profesör Maxime Dougados'un öncülüğünde, Fransız lupus referans merkezleri "Lupus hakkında 100 soru" adlı bir kitapçık yayınlayarak bu konuyu ele almıştır. Bu kitapçık Fransa'da ve Fransızca konuşulan komşu ülkelerde hastalar ve hasta dernekleri arasında kısa sürede başarılı olmuştur. Lupus hakkındaki yeni çalışmalar yapıldıkça, kitap her seferinde tanınmış lupus uzmanları ve hasta dernekleri arasındaki işbirliği ile birkaç kez güncellenmiştir.
Lupus Hakkında En Sık Sorulan Sorular
Tackling Lupus from Every Direction
What is lupus
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Validated by Doctors and Patients
Dr.
Sandrine MORELL-DUBOIS
Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille
Dr.
Noémie JOURDE-CHICHE
Department of Nephrology – Conception Hospital – Marseille
Pr.
Camille FRANCES
Department of Dermatology-Allergy – Tenon Hospital – Paris
Ms.
Susanne GYDESEN
Lupus Europe Patient Advisory Network – Denmark
Dr.
Isabelle MELKI
Pediatric Department – Robert Debré Hospital – Paris
Dr.
Christophe DELIGNY
Department of Internal Medicine – CHU Fort de France – Martinique
Dr.
Alexis MATHIAN
Department of Internal Medicine 2 – Pitié Salpêtrière Hospital – Paris
Ms.
Marianne RIVIÈRE
President of the AFL+ (French Association of Lupus and Other Autoimmune Diseases)
Pr.
Eric DAUGAS
Nephrology Department – Bichat Hospital – Claude-Bernard – Paris
Pr.
Thierry MARTIN
Department of Clinical Immunology and Internal Medicine – New Civil Hospital – Strasbourg
Ms.
Kirsi MYLLYS
Lupus Europe Patient Advisory Network – Finland
Pr.
Nathalie COSTEDOAT-CHALUMEAU
Department of Internal Medicine – Cochin Hospital – Paris
Pr.
Pierre-Yves HATRON
Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille
Mr.
Davide MAZZONI
Lupus Europe Patient Advisory Network – Italy
Ms.
Johanna CLOUSCARD
President of Lupus France
Ms.
Jeanette ANDERSEN
Chair LUPUS EUROPE – Denmark
Ms.
Lucja WANICKA
Lupus Europe Patient Advisory Network – Austria
Ms.
Susan FRANKEL
Lupus Europe Patient Advisory Network – UK
Dr.
Bruno RANCHIN
Nephrology Department – CHU Lyon
Pr.
Christophe RICHEZ
Rheumatology Department – Pellegrin Hospital Group – Bordeaux
Ms.
Dalila TREMARIAS
Lupus Europe Patient Advisory Network – UK
Ms.
Géraldine CONDETTE-WOJTASIK
Education nurse – Hôpital Huriez – University of Lille 2 – Lille
Pr.
Jacques-Eric GOTTENBERG
Rheumatology Department – Hautepierre Hospital – Strasbourg
Ms.
Daiva POIVILATE
Lupus Europe Patient Advisory Network – Lithuania
A hundred questions that we can ask ourselves concerning lupus…
The 100 questions initiative is a wonderful example of what cross-border collaboration among different stakeholders, such as the European reference Networks, can bring to people living with rare and low-prevalence diseases in Europe. At the end of the project, we expect that virtually all people with lupus in Europe will have access to the same high-quality information in a language they understand well. The idea is to replicate this initiative for the other diseases covered by ERN ReCONNET. (link to https://reconnet.ern-net.eu/).
The 100 questions initiative is a wonderful example of what cross-border collaboration among different stakeholders, such as the European reference Networks, can bring to people living with rare and low-prevalence diseases in Europe. At the end of the project, we expect that virtually all people with lupus in Europe will have access to the same high-quality information in a language they understand well. The idea is to replicate this initiative for the other diseases covered by ERN ReCONNET. (link to https://reconnet.ern-net.eu/).
The lupus in 100 questions is the result of excellent collaboration. Collaboration between doctors and patients, to bring trusted medical information answering key patient questions in a format that meets people´s needs, collaboration across borders to reach all people living with lupus in Europe, and collaboration with the readers as they can raise questions in our contact page, from where we will select new questions to be included… Also, a big thank you to our French friends who have allowed us to reuse much of their work as a starting point for this European expansion.
The lupus in 100 questions is the result of excellent collaboration. Collaboration between doctors and patients, to bring trusted medical information answering key patient questions in a format that meets people´s needs, collaboration across borders to reach all people living with lupus in Europe, and collaboration with the readers as they can raise questions in our contact page, from where we will select new questions to be included… Also, a big thank you to our French friends who have allowed us to reuse much of their work as a starting point for this European expansion.
Finally, there is one place where I can find answers that I can trust to the many questions I have about my lupus. Until now, I was always wondering about the quality of the information I could find on internet or social media. I knew some was clearly wrong, but for the rest… Now I know I can trust these answers, written by leading doctors specialised in lupus, and checked both by their peers and by people that, like me, live with lupus
Finally, there is one place where I can find answers that I can trust to the many questions I have about my lupus. Until now, I was always wondering about the quality of the information I could find on internet or social media. I knew some was clearly wrong, but for the rest… Now I know I can trust these answers, written by leading doctors specialised in lupus, and checked both by their peers and by people that, like me, live with lupus
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