{"id":2269,"date":"2022-07-29T01:04:25","date_gmt":"2022-07-29T01:04:25","guid":{"rendered":"https:\/\/lupus100.org\/?page_id=2269"},"modified":"2023-03-30T11:09:11","modified_gmt":"2023-03-30T11:09:11","slug":"about-lupus","status":"publish","type":"page","link":"https:\/\/lupus100.org\/en\/about-lupus","title":{"rendered":"About lupus"},"content":{"rendered":"\t\t
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About<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t100 QUESTIONS\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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IN<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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100 QUESTIONS<\/h1>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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100 QUESTIONS TO ASK ABOUT LUPUS<\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus, the disease with 1000 faces. While some will have access to validated information, too many will end up on the internet, where “word of mouth”, uncontrolled data, rumours or unconfirmed research will increase their confusion, create anxiety or even lead them to incorrect actions.<\/p>

In 2010, under the lead of Professor Maxime Dougados,\u00a0 the French centres of reference on lupus addressed this issue through the publication of booklet \u201c100 questions about lupus\u201d. This booklet was quickly successful amongst patients and patient associations, in France and the neighbouring French speaking countries. As the knowledge about lupus continued to progress, the book was updated on several occasions, each time with the cooperation between French renowned lupus experts and patient associations.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Being involved in the European reference network ReCONNET, that brings together international leading experts on lupus and other connective tissue diseases, Lupus Europe raised the need to have similar information available not just in France, but all-around Europe, so that all people living with lupus in Europe can benefit from quality information in a language they understand. The project to translate and adapt the French booklet emerged and was endorsed by ERN ReCONNET in 2021.<\/p>

Over the past months, a cooperation between Lupus Europe\u2019s Patient Advisory Network, doctors specialised in lupus and Katana Sante (owner of the 100 questions series), created the website you have reached today. The list of questions has been updated to better consider current European realities. All answers have been re-checked for their accuracy and up-to-dateness. Translation into English has been performed with particular care to ensure both correctness and readability by non-native speakers. We hope that this reading will help you find answers to your questions about lupus.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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As for the next steps, we see two key areas of ongoing development:<\/p>

Firstly, our objective is to translate this information into as many European languages as possible, seeking maximal coverage of patients and doctors, wherever we can ensure high quality translation and a proofreading both by experienced doctors and by patient representatives. We hope that making such information available on the web in their own language will help people living with lupus obtain quality answers to their questions and move away from searching for answers on misleading websites or social networks, and help GP\u2019s, nurses and other health care professionals grow their knowledge of the disease and its many aspects.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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Secondly, it would be na\u00efve to think that this list of 100 questions is exhaustively, once, and forever, responding to all questions one might have about lupus, or that the answers provided will solve all the problems. This set of information will never replace the dialog between the patient and his\/her lupus doctor. We do hope it will encourage patients to raise their questions and obtain needed clarifications.<\/p>

On our side, we are putting in place a process to maintain all answers up-to-date and to update the list of questions, as new developments emerge, or we obtain new suggested questions from our readers.<\/p>

On the readers side, whether they are persons living with lupus or health care professionals confronted with the disease, we do hope that the basic knowledge provided will help them open a fruitful and well-informed dialog with lupus experts or patient organisations, to grow their knowledge of the disease and competencies in managing it.<\/p>

Happy reading!<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

About 100 QUESTIONS People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus About IN 100 QUESTIONS People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus 100 QUESTIONS TO ASK […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-2269","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/pages\/2269","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/comments?post=2269"}],"version-history":[{"count":38,"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/pages\/2269\/revisions"}],"predecessor-version":[{"id":3934,"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/pages\/2269\/revisions\/3934"}],"wp:attachment":[{"href":"https:\/\/lupus100.org\/en\/wp-json\/wp\/v2\/media?parent=2269"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}