There is still so much to learn about lupus in Europe. One of the ways this is happening is through surveys. Some are organised by LUPUS EUROPE, others by the European reference Networks or our partners, others by academics or other member groups… To help you contribute, we have assembled here some of the surveys currently available. Don’t hesitate to click on the respective links to provide your input to all!
#Fatigue is present in most #lupus patients and, according to our European patient survey conducted in 2020, is the most bothersome of #lupus symptoms.
One of the targeted interventions in fatigue is exercise
Have you seen our exercise program? 👉
Me & Lupus - Lupus Europe
LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across...
buff.ly
✅ May is #lupusawareness month
Let's (re)check 🔎 how #digitalhealth & #bigdata 🖥️ can be used to improve the care 🏨 of #patients with #autoimmune diseases such as #Lupus. There are so many potential applications 😍
Check our paper at: https://doi.org/10.1016/j.autrev.2021.102864
✅ May is #lupusawareness month
Following yesterday's talk 📺 for @TAYInternists & @AJInternistes (thank you 🙏) let's (re)view the general strategy 🧑🎓 to decide the potential attribution 🔎 of #neurological and #psychiatric manifestations 🧠 to #Lupus (#NPSLE)...or not.
Our Secretary, Annemarie Sluijmers, today talked about "the Patient Experience of Feeling Left Behind" at #WHA75 event organised by @IADPO @IAPOvoice and @ILDSDerm
Lupus & lupus nephritis can affect a person's reproductive health, however a safe pregnancy is possible with planning. If you're living with lupus and considering pregnancy, watch this caption-supported video about pregnancy planning from the @ACRheum.
Lupus & Pregnancy - Conversations for Primary Care Providers to have with Patients
This is "Lupus & Pregnancy - Conversations for Primary Care Providers to have with Patients" by ACR Lupus Initiati...
acr.tw
Thank you for highlighting our study 😃! Coping strategies are key for accepting diagnosis and adapting to the limitations patients may have due to #lupus
✅ May is #lupusawareness month
Let's discover the main strategies used by #Lupus #patients to cope with the disease (in their own words). A very interesting study by @LupusEurope & Mosca, just published in Lupus Sci Med at: https://lupus.bmj.com/content/lupusscimed/9/1/e000656.full.pdf
5 years on from EULAR recommendations on prescribing in 🤰: how has expert opinion changed?
- More use of csDMARDs & TNFi
- More hestiancy for NSAIDs & pred
- Preference for fab fragments (cimzia) & fusion proteins (etanercept) over complete monoclonals
Changes to expert opinion in the use of antirheumatic drugs before and during pregnancy five years after EULAR: points to consider
Véronique Laure Ramoni, Céline Häfeli, Nathalie Costedoat-Chalumeau, Christina Chambers, Radboud J E M Dolhain, Marcell...
academic.oup.com
🆒 I'm feeling very privileged to give a talk about the management of neuropsychiatric #Lupus (#NPSLE) tomorrow evening for the young internists of @TAYInternists & @AJInternistes 👍 Thank you very much for your invitation 🙏 https://twitter.com/TAYInternists/status/1528759341955817472
2nd 📢 Francophonic 🇫🇷 young internists evening is only one day away ⏰
➡️ Let’s talk #Lupus during #LupusAwarenessMonth
@Lupusreference @Dhrif_CTD @HoussemAbida2 @LorisPSA https://twitter.com/tayinternists/status/1519052795277680643
✅ May is #lupusawareness month
Let's (re)check the main targets 🎯 of autoantibodies in #Lupus:
Anti-Sm target proteins of the common core of U1-2-4-5 small nuclear ribonucleoproteins (snRNP) which combine to form the spliceosome and removes introns from transcribed pre-mRNA 👍
✅ May is #lupusawareness month
One of the main goals 🎯 of treatment in #SLE is to prevent #DAMAGE 🚧 Damage in #Lupus is irreversible 💔 but the functional consequences may improve 📈 over time 🕑 through physiological adaptation ✅ or treatment 💊
Check:https://doi.org/10.1002/acr.24849
✅ May is #lupusawareness month
Let's (re)check 🔎 the burden of systemic #Lupus in Europe. Do you agree with these numbers? An amazing study by @LupusEurope
#LupusAwarenessMonth
Check the FULL paper for all details at: http://dx.doi.org/10.1136/lupus-2020-000469
There are over 100 autoimmune & autoinflammatory diseases as well as conditions that may involve some form of arthritis. Out of all those conditions only a few, including some that are rare, involve early-onset inflammation-driven arthritis as a major clinical component
✅ May is #lupusawareness month
And it's a great opportunity to remind you ⬇️ of the incredible power of physical activity 🏃 in #lupus 🦋 Key messages:
- PROVEN to improve #fatigue 👌
- Start low/slow 📈
- Don't jump on inflammed joints!
- Use sunscreen 🌞
Our @CRMR_RESO reco ⬇️
IF you have #Lupus and #Fatigue, you may participate to our #LEAF study (➡️ Link: https://iamfatigued.limequery.org/584745?lang=en) and in 15 min get a personalized assessment + detailed recommendations about how to IMPROVE FATIGUE in your very own situation. Please give us some feedback 🔄 we need it!
Lack of awareness leads to
- Delayed diagnosis
- Compromised QoL
- ⬆️healthcare costs
Education about AUTOimmune & AUTOinflammatory diseases,including the fact they are full body diseases affecting many parts (joints,tissues,organs) is necessary to improve QoL #AiArthritisDay
Don’t forget @eularYoungPARE event on coping with a diagnosis, which starts in 1 hour. It might be useful for #lupus patients that have just been diagnosed and their families
📣 Join us today in #YoungPAREwebinar "Coping with a diagnosis – Accepting your diagnosis can make you stronger"!
📅 19 May 2022, 20:00 - 21:00 CEST
Register / Login to attend 👉 https://bit.ly/3s8poaV
#eularPARE #EULAR #YoungPARE #rheumatology #FightingRMDsTogether #rheuma
🆒 Today I will give a talk 🔊 about the most promising molecular targets 🎯 and future #treatments 💊 for systemic #Lupus for the French Society of Immunology @sfiimmunologie. Thanks for the invitation! #immunology
Thanks to all patients around the world for joining the global campaign to #MakeLupusVisible!
From sharing their #lupus story or educational facts about this cruel disease, to wearing purple and lighting up landmarks, check out some of the best photos from people across the globe that came together last week to #MakeLupusVisible on #WorldLupusDay. https://youtu.be/IJgNe3dZRcY
✅ May is #lupusawareness month
Check the contemporary management of #Cutaneous #Lupus erythematosus (CLE) ⬇️
- Acute CLE: typically associated with systemic lupus (#SLE)
- Subacute CLE: drug-induced?, check anti-SSA
- #Discoid CLE: stop smoking, topics, MTX+Thali if severe.
Many of the treatments used in #lupus are not specifically approved for #SLE. However, they have been proven to be safe and effective. If you wish to learn more about drug repurposing, don't miss out #EULAR2022
📢 Attend the #EULAR2022 Scientific session:
👨⚕️ Drug repurposing in Rheumatology: from bench to bedside
👉 Learning objectives https://bit.ly/3jWYONi
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm
@EMEUNET
@eularPAED
@eularHPR
There are over 100 autoimmune and autoinflammatory diseases as well as conditions that may involve some form of arthritis. Out of all those conditions only a few, including some that are rare, involve early-onset inflammation-driven arthritis as a major clinical component. This type of inflammation-driven arthritis is otherwise known as “autoimmune arthritis" or "autoinflammatory arthritis", depending on the condition it is associated with, or more simply AiArthritis.
Lupus can involve early-onset inflammation-driven arthritis as a major clinical component.
However, as a systemic autoimmune disease lupus affects more than “just” the joints. Inflammation in SLE can affect the whole body.
Approximately 300 million people worldwide have a diagnosis of an AiArthritis disease.
World AUTOimmune AUTOinflammatory Arthritis Day, also known as #AiArthritisDay, aims to raise awareness of autoimmune and autoinflammatory diseases that can cause joint inflammation.
May 20th is #AiArthritisDay. Join us and DRIVE awareness for these conditions that, like #lupus, affect the lives of so many people around the world.
For more information you can visit www.aiarthritis.org or follow International Foundation for Autoimmune & Autoinflammatory Arthritis
Autoimmune & Autoinflammatory Arthritis disease nonprofit
www.aiarthritis.org
Patients who use professional experiences and global conversations to impact autoimmune & autoinflammatory arthritis disease education, advocacy, and research.Може ли лупуса да засегне мозъка и в какво се изразява.Благодаря
RUPUS🦋🦴👍🏻
Thank you LUPUS EUROPE!
SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain and joints, with different grades of severity. There exists a range of coping strategies lupus patients may use to deal with the impact SLE has on their lives.
Alain Cornet, Davide Mazzoni, Angela Edwards, Dario Monzani, Gabriella Pravettoni, Jeanette Andersen and Prof. Marta Mosca analysed data from the "Living with Lupus in 2020" survey and were able to identify the most frequent words used by patients to describe their coping strategies, grouping them into significant themes. Five themes, corresponding to as many coping strategies, were identified and all strategies were quite important for patients.
The study's authors were also able to test the possible association between these themes and some patient characteristics. The results of this study have strong implications for clinical practice and for interventions aimed at improving patients' quality of life.
Read the full research by clicking on the link below:
lupus.bmj.com/content/9/1/e000656
Coping with systemic lupus erythematosus in patients’ words
lupus.bmj.com
Objective Previous research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large an...
As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.
We would greatly appreciate if you followed this rule when posting on the page.
Thank you
#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer
Wauvvvv SO good looking :-)
