#LupusChat

That’s a wrap! Two days of dynamic data and lively discussions around Accelerating Product Development for Pediatric Systemic Lupus Erythematosus (SLE). We are hopeful that this can lead to advancement and approval of more treatments for youth with Lupus.💜 #LupusChat #LADAOrg @ladaorg.bsky.social

Patients and Care Partners, McKenna Bowes, Chloe Raymond, Nis Cooper, Elizabeth SantaCruz, and Miah Andrade for the final patient panel of the day Patient/Family Panel: Risk Tolerance and Enrollment in Clinical Trials moderated by Dr. Stacy Ardoin #LupusChat #LADAorg @ladaorg.bsky.social

Dr. Hermine Brunner shared Lessons Learned from Conducting Clinical Trials in Pediatric SLE. Dr. Brunner discussed how trials have been delayed due to restrictive eligibility criteria and recruitment/enrollment difficulty. #LupusChat #LADAorg @ladaorg.bsky.social

Hey #LupusChat fam! We’re onsite today at the @fda.gov UMBaltimore CERSI Public Workshop: Accelerating Product Development for Ped SLE. Co-hosts @caringforlupus.bsky.social (and Patient Advocate Miah A.) and @syncenerdcarly.bsky.social are in the building to listen, learn, and share experiences.

🎉 Hey #LupusChat fam, join us in wishing our Co-host and sister in advocacy @xtel007.bsky.social a very Happy Birthday! We appreciate your dedication and continued work for the community. We hope your day is as spectacular as you are! 🎂🎈

We need innovative research that includes cross-sector collaborations and public-private partnerships, identifies causes, biomarkers, better trial methodologies, diagnostic measures and treatments, prevents complications, and eradicates #lupus. #LupusAwarenessMonth @lupuschat.bsky.social

#Lupus typically begins during critical years for education and career advancement, lupus profoundly disrupts working lives. We need better diagnostic tools and treatments so that we can achieve our life goals! #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social

Classification criteria are used to define #lupus research study populations due to lack of specific #biomarkers resulting in combining heterogeneous patients with various disease manifestations and pathophysiologies and pathogenesis into one group. #LupusAwarenessMonth @lupuschat.bsky.social

While some drugs do benefit people with #lupus, significant side effect profiles exist and can cause increases in infections, cancer, bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social

It is estimated that as many as one in every 250 African American women in America has #Lupus. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social @rheumcat.bsky.social @rheumresearch.bsky.social

What does a congressional hearing on kidney health mean for clinical practice? Hear directly from Dr. Suzanne Watnick, who testified, plus insights from Dr. Dan Weiner. 🎧 Tune in: bit.ly/3DamjQ9 (Episode 054) #CKD #Nephrology #Healthcare

#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth @lupuschat.bsky.social @michiganlupus.bsky.social

Although #lupus is more severe and more prevalent in non-white populations, recruitment of minority patients to participate in clinical trials has proven to be particularly challenging. #lupusawarenessmonth #lupusawareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Women of color tend to develop #lupus at a younger age, experience more serious complications and have higher mortality rates—up to 3 times the incidence and mortality of Caucasians. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Clinical trials aren’t designed to measure outcomes which are most important to those with #lupus such as mitigating fatigue, daily health-related qol, reduction in current drug regimen, steroid-sparing, side effect tolerability, and comorbid conditions. #LupusAwareness @lupuschat.bsky.social

#Lupus disproportionately affects women of color in the United States; it is 2 to 3 times more common among African-Americans, Hispanics and Latinos, Asians, and Native Americans. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

#LupusTaughtMe to adapt. I focus on what I can do instead of what I can't do. And there are always accomodations or modifications I can find for many things. I also listen to my body more. #LupusChat

This #LupusAwarenessMonth, we’re sharing the lessons it’s taught us. Lupus changes your life in ways most people don’t see. 💜 Finish the sentence: #LupusTaughtMe… Reply below + include #LupusChat so others can find your story. ✨

JointHealth™ express - #ArthritisAtHome 321 – Toward a liquid biopsy for #lupus nephritis. #LupusAwarenessMonth Watch now: arthritisathome.jointhealth.org?p=6943 #CRArthritis @arthritispower.bsky.social @lupuschat.bsky.social @lupus.org @fibroandlupus.bsky.social @jrheumatol.bsky.social

Some drugs used to treat #lupus are approved for other indications such as chemotherapies, used to treat cancer, and immunosuppressants, used post organ transplantation. Some are known to be teratogenic (causing birth defects) and often compromise fertility in men and women. @lupuschat.bsky.social

There are significant challenges in creating a uniform control group in #lupus clinical trials because of the variety of background and concomitant medications—usually immunosuppressants. #LupusAwarenessMonth #autoimmune @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social

Hoy es #DiaMundialDelLupus! 💜🌍 El lupus es una enfermedad autoinmune crónica que puede afectar a cualquier órgano. Los síntomas pueden cambiar a diario, el diagnóstico puede tardar años e incluso la luz solar puede desencadenar brotes. Ayuda a difundir la conciencia #LupusChat

Today is #WorldLupusDay! 💜🌍 Lupus is a chronic autoimmune disease that can affect any organ, not just joints. Symptoms can shift daily, diagnosis can take years, and even sunlight can trigger flares. Help spread awareness: share this post 💜 #LupusChat

Feliz Día de la Madre de #LupusChat 💜🌸 Hoy honramos todas las formas de maternidad. Madres viviendo con lupus, madres criando a un hijo con lupus, madrastras, madres elegidas, mujeres que querían hijos pero no pudieron, Te vemos 💐💜✨

Happy Mother’s Day from #LupusChat 💜🌸 Today we honor all forms of mothering. Moms living w/ lupus, moms raising a child w/ lupus, stepmoms, chosen moms, women who wanted children but couldn’t, moms grieving loss, & eldest daughters who had to mother siblings. We see you 💐💜✨

Today! #WorldLupusDay 🤩🦋 Excited about all the global awareness and looking forward to seeing Cardiff Castle lit up purple! 🏰🏴󠁧󠁢󠁷󠁬󠁳󠁿💡#Wales #Lupus

Help us celebrate #WorldLupusDay on Sunday by joining us in our #HatsOn4Lupus campaign to promote global #LupusAwareness. Just put on a hat and take a photo and post or send to us @caringforlupus.bsky.social @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

#Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is highly individualized, extremely volatile, debilitating, life-diminishing, and potentially fatal. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social

JointHealth™ express - Capsule 320 de #ArthritisAtHome - Particules fines et composés organiques volatils dans la pollution atmosphérique : facteurs de risque de #lupus. #LupusAwarenessMonth Visionner maintenant: arthritisathome.jointhealth.org?p=6933&lang=fr @mcgill.ca @lupuschat.bsky.social

In #CRArthritis 25, Dr. Alexandra Legge from @dalhousieu.bsky.social shares what the resident's pre-course is & what #lupus nephritis is & why it's important to diagnose & treat it early. Watch now: youtu.be/rqVordidTmE #LupusAwarenessMonth @arthritispower.bsky.social @lupuschat.bsky.social

By the most conservative estimates, there are at least 322,000 Americans with definite or probable #lupus. Recent independent surveys have suggested a prevalence as high as 1.5 million. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social

May is #LupusAwarenessMonth, and your voice matters. 💜 Lupus is different for everyone & the world needs to understand that. Share your lived experience using #LupusFeelsLike and #LupusChat to help others feel less alone and bring visibility to the realities of this disease.

#LupusFeelsLike a second full time job, honestly. #LupusChat

#LupusFeelsLike That sound from Trolls “hahahaha! Again!!” 🫩

Only five treatments are approved for #lupus (aspirin, corticosteroids, hydroxychloroquine, belimumab, and anifrolumab-fnia) and three drugs for lupus nephritis (belimumab, voclosporin and obinutuzumab). #autoimmune @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

Este mayo es el #MesDelLupus 💜 Comparte tu experiencia viviendo con lupus usando #LupusSeSienteComo + #LupusChat. Hagamos visible cómo es realmente vivir con lupus.

May is #LupusAwarenessMonth, and your voice matters. 💜 Lupus is different for everyone & the world needs to understand that. Share your lived experience using #LupusFeelsLike and #LupusChat to help others feel less alone and bring visibility to the realities of this disease.

#Lupus clinical research has been problematic due to the lack of basic understanding of the disease, reliable biomarkers, and uniform control groups, as well as clinical outcome measure limitations and the heterogeneity of the patient population. #lupusawareness #autoimmune @lupuschat.bsky.social

💜 May is Lupus Awareness Month! Lupus is a autoimmune disease that can impact the entire body & it’s often invisible. This month we encourage you all to help spread awareness, amplify patient voices, & advocate for better diagnosis, treatment, and support for those living w/ lupus. #LupusChat 💜

Lupus is an extremely complex chronic inflammatory autoimmune disease where a triggering agent causes the immune system to dysregulate and attack the patient affecting any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood & blood vessels. @lupuschat.bsky.social

Hey #LupusChat community! Join the livestream happening NOW as @lupus.org kicks off The National #LupusAdvocacy Summit! 🌐: www.youtube.com/live/E0Q8rxM...

Hey everyone, please join us in wishing our amazing friend, fierce advocate, and awesome #LupusChat Co-host, @caringforlupus.bsky.social a Happy Birthday! Thank Liz you for all your hard work. It is an honor to advocate alongside you. We love you and hope you have the best day and year! 🥳💜

Happy New Year #LupusChat family! We're another year stronger & we're looking forward to thriving together with each of you in 2026! 🥳💜

🆕 2025 ACR Guideline for Treatment of Systemic #Lupus Erythematosus 🦋 Just Released: Nov 3 #ACR25 🔥 🔸Review organ-specific treatment recommendations 🔸Steroid & HCQ Use Guidance 🔸Management of Comorbidities ➠ Read the Full Guideline here: acr.tw/47mkegj #RheumSky #SLE #Rheumatology

#LADAorg is honored to sponsor a table at the LRA Gala to recognize people with #lupus for their grace, dignity and courage while supporting #lupusresearch. @lupuschat.bsky.social @annezab.bsky.social @caringforlupus.bsky.social @masonicresearch.bsky.social @lupusresearch.bsky.social

JointHealth™ express - Call for patient input on anifrolumab (Saphnelo®) for systemic #lupus erythematosus. Learn more: bit.ly/ACECDAPatien... #SLE #patientinput #ACEAdvocacy @arthritispower.bsky.social @lupuschat.bsky.social @fibroandlupus.bsky.social @schroeder-uhn.bsky.social

Happy Holidays to everyone in the #LupusChat family! We wish you nothing but peace, love, and happiness. Remember to take some time for self-care. We love you all! 💜 🎄📯☃❄⛄ ~ The #LupusChat Team

Meeting with like-minded people to improve lives of patients at @ACRheum #ACR25 is wonderful #Sjogrens #lupus #SLE