Joined November 2022
Let’s step into our patients’ world and explore what it’s like to live with #Lupus 🚨Among the leading causes of death in young women 😔Substantial burden on quality of life 🔁Disease control that is often incomplete 💊Treatments with limitations Sponsored by BMS #Rheumatology
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This #WorldArthritisDay, let’s look beyond what we can see. Arthritis is more than joint pain. For millions of people, it affects how they move, work, connect, and experience everyday life. At the Arthritis National Research Foundation, we’re supporting the scientists working to change that. By funding promising researchers and advancing our understanding of arthritis and related autoimmune diseases, we’re helping move research forward and bringing us closer to better treatments and, one day, a cure. Because behind every discovery is the possibility of a better tomorrow. This #WorldArthritisDay, stand with us for a future beyond arthritis. Learn more at curearthritis.org
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Arthritis is more than joint pain. It's more than a diagnosis. And it's certainly not just a part of getting older. Today, October 12, is World Arthritis Day — a reminder that millions of people are living with conditions that can affect nearly every part of their lives, often in ways others cannot see. According to the CDC, more than 53 million U.S. adults — roughly 1 in 5 — have been diagnosed with arthritis. But behind that number are people whose lives don't stop when symptoms begin. People working through fatigue. Navigating chronic pain and inflammation. Losing sleep. Canceling plans. Adjusting routines. Trying to explain symptoms that may change from one day to the next. And sometimes, facing the exhausting task of convincing others that what they're experiencing is real. Arthritis doesn't have one face, one age, or one story. There are more than 100 types of arthritis and related rheumatic conditions, including osteoarthritis, rheumatoid arthritis, psoriatic arthritis, and juvenile idiopathic arthritis. Each comes with its own challenges, and no two people's experiences are exactly alike. That's why awareness must go beyond recognizing symptoms. It means taking pain seriously. Supporting earlier diagnosis and access to appropriate care. Understanding that disability isn't always visible. Making room for accommodations, rest, and the reality that someone's abilities can change from day to day. It also means listening to patients — not just talking about them. At CreakyJoints, we believe people living with arthritis deserve reliable information, compassionate care, and a meaningful voice in decisions affecting their health. And to everyone living with arthritis: You are more than your diagnosis. Your experiences matter. Your voice matters. And you deserve to be heard. This World Arthritis Day, we want to hear from you: 💬 What's one thing you wish the world understood about living with arthritis? Your answer might be exactly what someone else needs to hear today. Explore patient-centered arthritis education and support: creakyjoints.org/ Different journeys. One community. 💜 #WorldArthritisDay #ArthritisAwareness #CreakyJoints
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What if understanding autoimmune disease starts with looking at it one cell at a time? ANRF-supported researchers are taking a closer look at the individual cells involved in autoimmune disease—uncovering how they behave, interact, and contribute to inflammation. The more we understand what’s happening at the cellular level, the closer we get to more precise ways to treat disease. One cell at a time, research is bringing us closer to better answers. Read about the latest research: ow.ly/3Lhv50ZV3LA
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Yesterday in Plymouth, I spoke about what’s at stake over the final 30 days. This election is about more than political parties. It’s about the American values that have always moved our country forward. Now we have 29 days. We need everyone in this fight. Let’s get to work.
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Touma Z, et al. reported findings consistent with a potential long-term cardiovascular benefit of anifrolumab 300mg plus standard of care in adults with SLE. Get your insights now on the #LupusForum ow.ly/9P4a50ZLUNO
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Trisha retweeted
SWHR is featuring Clinical Advisory Board member Dr. Kate Wolin today for #NationalWomensHealthAndFitnessDay, September 30. Dr. Wolin is a Fellow of the American College of Sports Medicine @ACSMNews Learn more about the SWHR Clinical Advisory Board at swhr.org/about/clinical-advi…
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Thank you, @CAgovernor for signing #AB2009 by @PhillipChenCA and @AsmSolache. By modernizing California’s source plasma donation center regulations, this law will ensure that patients who depend on plasma-derived medicines have access to them when they need them most.
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As CAR-T enter the lupus arena, it's worth asking: what are T cells actually doing in #SLE? Rachel Simon (BIDMC '26), Wenliang Pan & George Tsokos review their role in disease pathogenesis, biomarker development, and personalized treatment. doi.org/10.1002/art.70355
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Enjoyed speaking at our annual Duke Lupus Community Event yesterday on “Understanding Lupus Labs” 🩸🧪 #Lupus #PatientEducation #RheumX
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Trisha retweeted
1 in 17 women will develop #LungCancer in her lifetime. Do you know your #diagnostics and screening options? This #WorldLungDay, explore SWHR’s fact sheet about the different tests used to diagnose lung cancer: swhr.org/resources/value-of-…. #SWHRtalksCancer #SWHRtalksDiagnostics
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“It boils down to access. I look at access as affordability and availability. Even when vital treatment is affordable, it isn’t automatically available.” @MattieRheumMD explains how lower prices don’t necessarily mean access and the importance of ensuring patients get the treatment they need in a timely manner. #AfPASummit26
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“User fee acts are the number one way to speed up the FDA’s process to increase patient access.” AfPA's Public Policy Director Gavin Clingham speaks to the upcoming reauthorization of GDUFA IV. He encourages advocates to review the @GenericsProject's new toolkit for more information. bit.ly/4r7U5tY #AfPASummit26
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“Patient groups need to be resilient. We have to keep fighting the fight in the face of adversity.” @AutoimmuneAssoc's @AmandaKrzepicki shares how she empowers patient advocacy communities to continue speaking to state and federal policymakers to make actionable change. #AfPASummit26
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Our friends at @StopSarcoidosis ensure that patient stakeholders play an active role in research proposals. Every step taken to include patients reminds us that we truly are #strongertogether
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There’s more than one way to make a difference for lupus research. 💜 However you choose to give, your support helps researchers pursue new discoveries and move us closer to a world free of lupus. Your support today can help shape what’s possible for the lupus community tomorrow. Explore all the ways you can give: lupusresearch.org/join-us/do… #SupportLupusResearch #HopeInAction #TheFutureOfLupus
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#MedicaidMatters to millions of Americans who are in danger of losing their Medicaid coverage, resulting in their healthcare costs increasing and their care delayed. Congress needs to protect #Medicaid. @ModernMedicaid @SenSchumer @SenGillibrand
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We may walk in different places, but we’re moving #LupusResearch forward together. Join the Global Walk on your own or with a team, anywhere and anytime. Every step taken gets us closer to a cure. Start your page: LupusWalkGlobal.org
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Pain isn’t one-size-fits-all. Neither is the way we experience it. Burning. Aching. Throbbing. Tingling. Shooting. Localized or widespread. The words we use to describe pain matter — they can offer important clues about what may be causing it and help guide conversations about care. For #PainAwarenessMonth, learn about different types of pain — and questions you can bring to your next doctor’s appointment, from “Why is my pain worse in the morning?” to “What could it mean if my pain has lasted more than three months?” Understanding your pain can help you find the words to talk about it — and advocate for the care you need. creakyjoints.org/about-arthr… #ChronicPain
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