Alain CornetHas your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016. The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are […]
Alain CornetThis week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.
Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
✅ Updated timeline for #Lupus trials ⬇️ including successful trials for dapi & obi ! As always, please do let me know if something is not correct and I will reupdate the slide 🔄
🧑🔬 Become a Patient Research Partner and make a meaningful impact in research!
🖥️With this course you’ll gain the knowledge and skills to represent the patient perspective, ensuring that research truly reflects patient needs and experiences.
👉https://esor.eular.org/course/view.php?id=487
🎉Abstract submission for the EULAR 2025 Congress opens TODAY!
👉 Find out more: https://pulse.ly/vc82ekpemg
#EULAR2025 #Rheumatology #Research #AbstractSubmission
🍂 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!"
📢 Welcome from the EULAR 2025 Programme & Abstract Chairs!
📅 Mark your calendars! The call for #EULAR2025 Abstract Submission is coming soon.
🌟 Abstract submission opens on 1 October 2024!
🕐 Submission deadline: 15 January 2025
🔗 Learn more 👉 https://pulse.ly/aayupgo4c2
🔴 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
🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.
👀 Learn more about CV risk management in RMDs with the @eular_org recommendations by @SavinoSciascia @Lupusdoc @ramos_casals et al. ➡️ ➡️ https://ard.bmj.com/content/81/6/768
#WorldHeartDay
📢What do you know about #cardiovascular risk in #rheumatology?
We invite you to participate in an international survey on @eular_org guidelines (8,2 min)
🔗http://bit.ly/4gjx01C
Your participation will be key to raise awareness and improve patient care
🔄RT appreciated
🍂 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!
2 CommentsComment on Facebook
Thank you! Great moment indeed.
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.
🔴 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
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.
⁉️Do you have depression? If you do, know that it is frequent in #lupus patients.
🚨Our 2020 Living with Lupus survey unveiled that #depression ranks among the most common symptoms in lupus patients.
⚠️ Out of 683 patients (16.7%) who identified anxiety or depression as one of their most bothersome symptoms, only 315 (46.1%) reported using antidepressant or anxiolytic medication.
lupus.bmj.com/content/8/1/e000469
🔬 Recent studies support these findings, revealing that depressive symptoms affect anywhere from 11% to 71% of patients with systemic lupus erythematosus (SLE).
🔴 This common neuropsychiatric manifestation can be due to:
1️⃣ The illness itself.
2️⃣ Some of its treatments.
3️⃣ Other clinical variables, like fatigue or pain.
4️⃣ Sociodemographic factors.
👉 A specific study highlighted that #SLE patients report worse health-related quality of life, fatigue, anxiety, depression, and sleep quality compared to the general population and other chronic diseases.
‼️ Understanding these realities profoundly is essential for providing lupus patients with the necessary support and holistic care.
✅ It's crucial to encourage dialogue and action around mental health.
🌈 The #kicklupus campaign is committed to shedding light on these issues and driving positive change in the lives of those affected by lupus.
For more information and support, visit the member organisations section on our website and reach out to your national lupus organisation.
www.lupus-europe.org/lupus-members/
1 CommentsComment on Facebook
🦋 Participate in the LUPPOS Survey!
Help health professionals understand your attitudes towards steroid use in #SLE treatment.
📊 This study aims to identify the habits and attitudes towards the use and withdrawal of glucocorticoids among those living with SLE.
💬 The survey is available in English, French, Spanish, Portuguese, and Italian.
Your responses will help improve patient care.
🔗 Participate and share your valuable insights:
🇬🇧English: forms.gle/QajmuT7AtTZw1YeaA
🇫🇷French: forms.gle/LzJ9ZNPzejToveWX9
🇪🇸Spanish: forms.gle/U78xb3CrdPr7ZUPh7
🇵🇹Portuguese: forms.gle/Ej5jmc5SHezbt7Cn7
🇮🇹Italian: forms.gle/rgByP8KZDMLY8f2V9
0 CommentsComment on Facebook
;
