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 […]
WIN-Lupus. RCT of stopping treatment in SLE. All on HCQ. Randomised to stop Aza/MMF after being stable on for 2-3 years. Relapse proliferative nephritis in 25% vs 10%. Severe SLE flare 32% vs 13%. @RheumNow #EULAR2022 OP0280 http://scientific.sparx-ip.net/archiveeular/index.cfm?c=a&searchfor=OP0280&view=1&item=2022OP0280
📢 Do you want to learn more about how Clinical Practice Guidelines and Clinical Decision Support Tools are developed as well as how the patient voice can be successfully incorporated?
Do not miss this practical guide on patient involvement!
✅ Read now: http://l.eurordis.org/yySw
Wonderful summary of #EULAR2022 SLE & APS abstracts by @cristianasieiro for the #eularEMEUNET @eular_org Highlights Newsletter
Check it out here: https://emeunet.eular.org/myUploadData/files/eular_2022_hl_final.pdf
#lupus #SLE #EMEUNETnews
@lauraandreoli80 @JuliusLindblom @IoannisParodis
☑️ Lot's of interest & suggestions about refractory #lupus #nephritis 👍 including checking adherence, rebiopsy & alternative treatments 💊 such as CNI (TAC, VOCLO), RTX, OBI, BEL, etc... it's also good to know that there are MANY ongoing phase 2 & 3 clinical #trials 🎯
Our Chairman @edvital has recently hosted a #EULAR 2022 congress review, highlighting some of the key #lupus data presented at congress.
🚨 VERY IMPORTANT paper for #lupus mothers by Reynolds et al. ⬇️ There were NO significant increase in malformations or intrauterine growth restriction in children exposed to #Hydroxychloroquine in pregnancy. This is both important and reassuring 👍
https://doi.org/10.1093/rheumatology/keac372
Are we moving towards a paradigm shift in the management of #lupusnephritis after the introduction of #belimumab and #voclosporin?
How far are we from implementation of combination therapy and #personalisedmedicine in #lupus nephritis? #SLE
🆒 #LUPUS #NEPHRITIS update
- ISN/RPS 2003 findings
- Suggested 2018 updates
- Typical presentations
- Autoantibodies (#membranous)
Would love some feedback 🔄 from the #nephrology colleagues 👍
#Rheumtwitter #Nephpearls
Prescribing ⬇️dose acetylsalicylic acid to pregnant women with SLE is a well known practise in many clinics. According to this study,if there's no renal involvement nor aPL,there is a ⬇️risk of severe obstetric complications.
Always discuss your treatment plan with your physician
Dr. Tani etat Shows that in their #cohort, patients with #SLE without #renal involvement & were aPL-negative seem to have a lowrisk of severe obstetric complications (pre-eclampsia), & #LDASA doesnot provide a significant advantage over these complications
https://bit.ly/3n1SxBD
🆕 For those of you who would not be FULLY CONVINCED of the benefits of physical activity and #holistic management for #FATIGUE in inflammatory #rheumatic diseases 👀⬇️ #digitalhealth https://twitter.com/TheLancetRheum/status/1541550440310943745
NEW RESEARCH—The Lessening the Impact of Fatigue in Inflammatory Rheumatic Disease Trial (LIFT) shows that remotely delivered cognitive behavioural and personalised exercise interventions reduce #fatigue in a variety of inflammatory rheumatic diseases https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00156-4/fulltext
SLE is a very varied and widespread disease, so much so that it has numerous subgroups...Do you want to discover them?
To find out more, next Thursday 6 October 2022 there will be a dedicated session, don't miss it!
Consult the program: https://bit.ly/3w6EL5T
#SLEuro
Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by @IADPO.
🧰 The @EJPRareDiseases Innovation Management Toolbox (IMT), a library of translational medicine resources on #RareDiseases, is now available.
🛠Use the IMT now: http://imt.ejprarediseases.org/
▶️Watch the video tutorial: https://www.youtube.com/watch?v=H92b6WEWFhw
In case you wonder what an #immunoproteasome is... It is a type of intra-cellular structure which degrades ubiquitin-labeled proteins found in the cytoplasm in cells exposed to oxidative stress and proinflammatory stimuli. These pathways are actively studied in systemic #Lupus 👍
All our support on #WorldSclerodermaDay. #BloomWithScleroderma
Today is #WorldSclerodermaDay! 🌻
A day to raise awareness and show solidarity with those trying to find the light to bloom, despite living with this rare disease. We're here for you.
Let's #BloomWithScleroderma today and always.
Read more ▶️ https://tinyurl.com/3cn93hbb
NEW RESEARCH—The Lessening the Impact of Fatigue in Inflammatory Rheumatic Disease Trial (LIFT) shows that remotely delivered cognitive behavioural and personalised exercise interventions reduce #fatigue in a variety of inflammatory rheumatic diseases https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00156-4/fulltext
#Lupus nephritis treatment withdrawal
⬆️ risk relapse if treatment (AZA/MMF) withdrawn after 2-3 years
Risk factors for relapse:
⬇️c3
⬇️Hb
⬇️albumin
⬆️proteinuria
⬆️SLEDAI
Weaning of maintenance immunosuppressive therapy in lupus nephritis (WIN-Lupus): results of a multicentre randomised controlled trial
Objectives Lupus nephritis (LN) is a frequent complication of systemic lupus erythematosus (SLE). Severe (proliferative) ...
ard.bmj.com
POSITIVE results for the part 2 of the phase 1b/2 MISSION trial of #zetomipzomib (KZR-616), an immunoproteasome inhibitor in #Lupus #nephritis: 64.7% of patients achieved an overall renal response (>=50% uPCR reduction at 6 months) and 35.2% achieved CRR.
Kezar Life Sciences Announces Positive Topline Results from the MISSION Phase 2 Trial Evaluating Zetomipzomib for the Treatment of Patients with Lupus Nephritis | Kezar Life Sciences, Inc.
11 of 17 patients (64.7%) achieved an overall renal response of 50% or greater reduction in urine protein to cre...
ir.kezarlifesciences.com
Check out our new mini-review @FrontMedicine to find out how #CD8 #Tcells could play a key role in the #immunopathogenesis of #SLE in younger #juvenile-onset patients, where disease is typically more severe
👇
@Jury_Lab @UCL_RheumAYA @inespinedatorra
CD8+ T-Cells in Juvenile-Onset SLE: From Pathogenesis to Comorbidities
Diagnosis of systemic lupus erythematosus (SLE) in childhood [juvenile-onset (J) SLE], results in a more severe diseas...
doi.org
Is the way paved for people with #lupus to take the driver’s seat in their disease monitoring? What’s left to be done?
https://pubmed.ncbi.nlm.nih.gov/35054036/
Review by @IoannisParodis and @Stiddyo
#openaccess
Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations - IADPO.
Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.
You can find the survey and all the information about the project in this link: globalskin.org/research/about-phase-4
Today is #WorldSclerodermaDay! 🌻
A day that brings together scleroderma communities from around the world to raise awareness and show solidarity with those facing the challenges of this rare, invisible and disabling disease. On this special day, we want to reaffirm that we're here to support you, encourage you and help you find the light bloom.
#BloomWithScleroderma today and always.
Read more about our campaign 👉
fesca-scleroderma.eu/wsd2022/?utm_source=facebook&utm_medium=facebook-feed&utm_campaign=organic-c...
LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it.
Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue.
The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.
iamfatigued.limequery.org/584745?lang=en
This looks really interesting, thanks. Fatigue is probably the worst aspect of having Lupus. Anything that helps manage that has to be a bonus
Such an endeavour to struggle !
The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!
We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!
Congratulations Dalila Tremarias! Over the moon for you. They’re lucky to have you on board. 💜 👏
Congratulations Dalila 💜
Well done Dalila - so proud of you xx
Well done all of you and thanks .I am amy somers mum
I'm so proud of you!@Amy Somers.miss you much x
Congrats Dalila!!👍😁
What an amazing group of lupies.
Congratulations ❤️
Felicidades dalila
Dalilavan harte gefeliciteerd
Felicitaciones
🌹🌹🌹👍👋👋👋👋
