https://www.lupuschat.org/our-events daily 0.75 2024-03-08 https://www.lupuschat.org/our-events/acr19 monthly 0.5 2019-11-08 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1573245262341-9XKJS5ZUCG2VPG39D1NT/acr19.jpg Events - American College of Rheumatology Annual Meeting (#ACR19) Image description: a back drop view of Atlanta, Georgia in cerulean blue, with text reading: ACR/ARP Annual Meeting, #ACR19, see you in Atlanta! https://www.lupuschat.org/our-events/2019/4/5/lupus-2019-13th-international-congress monthly 0.5 2019-05-01 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556691092485-R4ITFSS9PWXBV76YJ2W2/Lupus2019SaveTheDateCard940px.jpg Events - Lupus 2019 13th International Congress on Systemic Lupus Erythematosus Image description: This meeting, “LUPUS: Gateway to the Future”, highlighted advances and insights from recent SLE research into the causes and outcomes of SLE, explored the promise of implementing a personalized approach to diagnosis, prognosis, and treatment, and provided a forum to hear exciting and innovative research from a new generation of investigators. https://www.lupuschat.org/our-events/2019/5/26/a-healthy-support-system-wheniflare monthly 0.5 2019-11-12 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556690656894-36YPA0HOAE6F495VFS4L/LC+_+Support+System.png Events - A Healthy Support System #WhenIFlare https://www.lupuschat.org/our-events/2019/5/19/lupusresearchmatters-new-now-next monthly 0.5 2019-11-12 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556690248544-WRPRDXGTCYCIBMFMTN9B/LC_+New%2C+Now%2C+Next.png Events - #LupusResearchMatters | New, Now, Next Image description: Join us on Twitter on May 19th at 3 PM Eastern Time for an insightful discussion on clinical and translational research. Together we'll explore both the current and future state of research and highlight prospective initiatives we envision on the horizon for Lupus. https://www.lupuschat.org/our-events/2019/5/12/speaking-up-advocateforlupus monthly 0.5 2019-11-12 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556689897550-CV6DODKSORD1CAA4I1NM/LC_+Speaking+Up.png Events - Speaking Up: #AdvocateForLupus Image description: Join us on Twitter on May 12th at 3 PM Eastern Time for a powerful discussion on self-advocacy.Together we'll explore ways to converse with the people in our lives about Lupus and how to stand up for ourselves as we #AdvocateforLupus. https://www.lupuschat.org/our-events/2019/5/5/shining-a-light-on-what-lupusfeelslike monthly 0.5 2019-11-12 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556689390557-8YHGFJYOPXGTXJ1C8B79/LC_+Shine+A+Light.png Events - Shining A Light On What #LupusFeelsLike Image description: ” Join us on Twitter on May 5th at 3 PM Eastern Time as we kick off #LupusAwarenessMonth with a conversation highlighting what #LupusFeelsLike. Together, we'll share our experiences and spread awareness by uplifting the voices of everyone living with Lupus.” https://www.lupuschat.org/our-events/2019/5/17/4th-annual-dc-lupus-consortium monthly 0.5 2019-11-12 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556685866006-AE645D1EVUZEAUNS2N9D/dclc_nihniams.jpg Events - 4th Annual DC Lupus Consortium & 25th Anniversary of Lupus Clinical Research Image description: National Institutes of Health-National Institute of Arthritis and Musculoskeletal and Skin Diseases promotional flyer for the upcoming 4th Annual DC Lupus Consortium and 25th Anniversary or Lupus Clinical Research event held May 17, 2019 8:00AM-11:30AM https://www.lupuschat.org/index daily 1.0 2024-03-08 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556678414647-73FOGYLUK35S20S8TIZZ/scroll+image_1.JPG Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680732068-CVEG3OV3A4O0JYPW8JRL/lupuschat3.jpg Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680618206-XSQQL5EN2Y7ZA72RGYHV/lupuschat6.jpg Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680620087-GUFJ9F1JGJSZWV01JEM6/lupuschat5.jpg Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680616743-2W2AZ3HPL142NZCD1RU8/lupuschat2.jpg Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680616200-T6GO9KKQC9DWUF7KQ6O8/lupuschat4.jpg Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556680729596-J6KDLTWSOKIZBBVHBIOE/lupuschat7.JPG Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511374717340-RAW2DI2DCRL2TAMR6QVF/blog_bg.jpg Home - blog https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1514048386244-M0D67LN2M3GUY4ARWQYE/resources_bg3.JPG Home - resources https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1514048370584-MVTENE3JTO17L2Q4VVLP/aboutus_bg3.JPG Home - about us https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511374741696-OENEXX4TVIAK46IWVHAO/forum_bg2.JPEG Home - forum https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511374385883-O1SWWIQQT0O6UZ1DU4ZC/scroll+image_1.JPG Home https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511374981882-A0BQHCJD3SJ3MQ2MCM64/aboutus_bg3.JPG Home https://www.lupuschat.org/blog daily 0.75 2024-03-08 https://www.lupuschat.org/blog/2024/3/7/our-diagnosis-is-their-focus-the-webinar-replay monthly 0.5 2024-03-08 https://www.lupuschat.org/blog/2021/5/31/what-does-the-future-hold-for-lupus-lupus-news-from-acr monthly 0.5 2021-06-10 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622478357498-KUCGDV9R754B8OBX2NIW/canstockphoto4425054.jpg Blog - What Does the Future Hold For Lupus? Lupus News From ACR - Make it stand out Black and white image. “Latest News” in typewriter font. https://www.lupuschat.org/blog/2017/11/22/navigating-school-life-with-lupus monthly 0.5 2021-05-31 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556685523548-N8PZ02VNNA45H7RZD4GP/nslwl_LC.jpg Blog - Navigating School Life with Lupus Image description: Parent holding hands with school aged child, wearing pink backpack, walking toward a school entrance. https://www.lupuschat.org/blog/2017/11/22/lupus-employment monthly 0.5 2021-05-31 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556688053605-BJW19M4UFA7K9GUZ25FI/Lupus%2B%26%2BEmployment%2Bblogpost%2BCH.jpg Blog - Lupus and Employment Image description: Business person holding a phone conversation at their office desk while smiling. https://www.lupuschat.org/blog/2017/11/22/how-the-doctor-patient-partnership-affects-treatment-adherence monthly 0.5 2021-05-31 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556688190770-GP4JF5Q13PGWWF4GOUIS/ChristeleBlog1.jpg Blog - How The Doctor-Patient Partnership Affects Treatment Adherence Image description: Patient and Physician reviewing information on clipboard in a medical examination room. https://www.lupuschat.org/blog/category/Employment monthly 0.5 https://www.lupuschat.org/blog/category/Lifestyle monthly 0.5 https://www.lupuschat.org/blog/category/Medical monthly 0.5 https://www.lupuschat.org/blog/tag/ACR monthly 0.5 https://www.lupuschat.org/blog/tag/lupus+research monthly 0.5 https://www.lupuschat.org/blog/tag/school monthly 0.5 https://www.lupuschat.org/blog/tag/adherence monthly 0.5 https://www.lupuschat.org/blog/tag/work+accomodations monthly 0.5 https://www.lupuschat.org/blog/tag/participatory+medicine monthly 0.5 https://www.lupuschat.org/blog/tag/employment monthly 0.5 https://www.lupuschat.org/blog/tag/American+College+of+Rheumatology monthly 0.5 https://www.lupuschat.org/blog/tag/504+plan monthly 0.5 https://www.lupuschat.org/blog/tag/FMLA monthly 0.5 https://www.lupuschat.org/blog/tag/lupus monthly 0.5 https://www.lupuschat.org/blog/tag/collaborative+medicine monthly 0.5 https://www.lupuschat.org/lupuschat daily 0.75 2021-05-31 https://www.lupuschat.org/lupuschat/09-26/lupus-nephritis monthly 0.5 2021-10-13 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633030475501-ICB2IMEAFZHJ6FMEDNL0/5.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q5: What are the goals of lupus nephritis treatment? How can patients and their care team collaborate to improve their quality of life? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633030457482-IOMME40N90I31YAAN1QR/2.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q2: How often are patients with systemic lupus erythematosus (SLE) diagnosed with Lupus Nephritis? Why is it important to detect lupus nephritis early? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633030467241-LHUKPGBJ4AGH2TP4ISNL/4.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q4: How is lupus nephritis diagnosed and what kinds of tests are used to monitor it? How often are these tests done and what are they looking for? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633053333633-LG0SK88WKU8P3J1LN36W/6.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q6: Can you share some tips and strategies for people newly diagnosed with lupus nephritis and some resources that can provide additional information, community, and support? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633030461873-69UFD50F1ZRQTSM4U12Y/3.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q3: Looking back, what are some signs or symptoms that you now understand were indications of kidney involvement? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633030442798-TW0HYNMOZAF78XIZTLC2/1.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Q1: What is the function of a healthy kidney? What occurs when a person has Lupus Nephritis? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633028973164-KAPE5HUP6B7BWSP744IZ/LN-+Aurinia.png #lupusChat - Shining A Light on Lupus Nephritis - Make it stand out Shining A Light on Lupus Nephritis September 26th - 3PM EST https://www.lupuschat.org/lupuschat/09-12/community-forum monthly 0.5 2021-10-20 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633994731812-ZA9VQR2F4U46P1IICDPZ/E_Cd7AMXsAIBj9Y.jpeg #lupusChat - Community Forum - Make it stand out Q3. What is a topic that you would like to see discussed at #LupusChat? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633994743718-TFODVEITFLMA4545GVQ3/E_G8qbLXIAIrAoy.jpeg #lupusChat - Community Forum - Make it stand out Q5, Does anyone have any celebrations on the horizon that we can collectively congratulate? Anything in the future that anyone needs well wishes for? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633994709663-JIOIPZ0FYHUGWOD6MRGR/E_CZaP7XoAAtdOZ.jpeg #lupusChat - Community Forum - Make it stand out Q1. For people with Lupus Nephritis: on a general health questionnaire, if you are asked if you have Kidney Disease, how do you answer and why? (via @Xtel007) https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633994725589-L2ARO24FT1ECLHV105G9/E_CbP3qXIAUagL7.jpeg #lupusChat - Community Forum - Make it stand out Q2. What are your favorite health-related mobile apps to use? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916769799-OEA4OHJCWMZW12FSE3P4/LC+Community+Forum+2021.png #lupusChat - Community Forum - Make it stand out Community Forum September 12th - 3PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Community Forum - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1633994737689-QLAQMZJ1VA4XYIZ2OUDJ/E_CmrzuWEAIFuht.jpeg #lupusChat - Community Forum - Make it stand out Q4. Do you have multiple health conditions? If yes, how do you manage them simultaneously? https://www.lupuschat.org/lupuschat/07-18/lab-work monthly 0.5 2021-10-13 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916239817-4X86RKCSFYAVFAOVM56A/3.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q3: Why do doctors check urine? What does it help detect? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - The Importance of Lupus Lab Work - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916232533-TZHZXLAZY893C3PL5BW8/1.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q1: What is the role of lab tests in monitoring Lupus? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916201065-XPLM67J0K7JP3J5I7DX5/LC+Lab+Work+2021.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916236231-29XOHEKRFO9WQZT6OWJX/2.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q2: Can one test alone diagnose Lupus? What tests are used? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916262932-QGVQ6W40DE4OFXW43F0R/5.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q5: How are biopsies (ex: skin, kidney, etc) used in diagnosing and monitoring Lupus? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916244861-OTE048KSWAXH8L7W18VZ/4.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q4: Why is it helpful to get lab work done prior to our appointments? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631916268515-QN1FQYBYGIRS12E2ZU37/6.png #lupusChat - The Importance of Lupus Lab Work - Make it stand out Q6: What is an ANA test and what can it indicate? https://www.lupuschat.org/lupuschat/2021/5/31/title-yn92y-2yddr monthly 0.5 2021-10-01 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164340056-APEQM0V4KWDAFXN1H12K/5.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q5. What are some care methods that help provide comfort when you’re experiencing pain, insomnia, and/or brain fog? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164631424-6JO5RZTPEOAVT0FD0CY8/3.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q3. In what ways can self-care look different for people with chronic illness? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164322071-QHDX4FCW8G9OYAUGX58N/1.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q1. How do you define self-care? What are your thoughts on the practice of self-care? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Self-care for Chronic Illness - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1631906757688-U5L8067R0JCO3IAEVZV2/LC+Selfcare+2021.png #lupusChat - Self-care for Chronic Illness - Make it stand out Self-care for Chronic Illness June 20th - 3PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164327304-5XGIME880Z5HBGMAALPO/2.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q2. Is self-care something that you take into consideration in your life? Is it part of your routine? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164343929-VWNSVULMMFW9YTW2VOAI/6.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q6. If you’re comfortable, can you please share some self-care tips and practices that you’ve found to be most helpful? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1627164335027-CBZ6MYVGU0VNSABVAIW3/4.png #lupusChat - Self-care for Chronic Illness - Make it stand out Q4. What do you do when you’re not able to set time aside for yourself? https://www.lupuschat.org/lupuschat/2021/5/31/title-yn92y-8mm94 monthly 0.5 2021-10-01 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497879413-5TKXR11DMSGWSNHGF0ZX/3.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q3. How does exposure to sunlight, UV rays, artificial/blue light affect our skin, and what role does it play when it comes to lupus disease activity? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497874455-BEDC84VBKYYYPK26TMWX/2.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q2. Did a physician talk to you about photosensitivity and sun protection at the time of your diagnosis? If not, when and where did you learn about it? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497892747-8P7BCGZ9BT91H2CAR3OL/5.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q5. What kinds of sunscreen are available? What is the proper way to apply it, how much should we use, and how often should we reapply it? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497900455-3RJ9D7R0AZW4QF6O9CXP/6.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q6. What types of sun protection do you use? What are some tips that have been helpful to you? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497867053-XSWYUEI1DE08ADEQPLFQ/1.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q1. What is photosensitivity? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497885543-DJ24EUGU87C045F5NZRT/4.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Q4. If you feel comfortable, Can you share a time when you experienced photosensitivity or a reaction as a result of not having adequate sun protection? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497492417-9HWRM9HYFEAHIST0VP4K/LC+Sun+Protection+2021.png #lupusChat - Lupus and the Sun: Managing Care and Protection - Make it stand out Lupus and The Sun: Managing Care and Protection June 6th- 3 PM EST https://www.lupuschat.org/lupuschat/2021/5/31/title-yn92y-g5tbt monthly 0.5 2021-07-08 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1625105892866-CRXVQ7OV0V94QP728O5S/20210630_221654.jpg #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out The #LupusChat Influencers https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408913721-N77ERWPWYBJ2CW4P8UT2/1.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q1. What is something you know about chronic illness now that you wish you knew when or before you were diagnosed? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408921129-4ABGYHIOJ66ODQUMW8UX/3.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q3. Can you share some advice or guidance that you've found valuable from someone also living with Lupus, disability, and/or chronic illness? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408924741-M7JPKAI6XF85RE2ZJC0C/4.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q4. What has your life with lupus, chronic illness, and/or disability taught you about the importance of learning how to support yourself? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408917310-IYDI4Q6IOI2U09UR2QYE/2.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q2. How has living with Lupus and/or chronic illness led you to be more in tune with your body and emotions? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408928267-8EVKTS638YG44OOAX8X2/5.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q5. Not only is our physical well-being important but both our emotional and mental state must be healthy. Let’s explore what that has meant since we’ve learned of our diagnosis. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408931402-JGYMJOEJJA4LK25HMBGH/6.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Q6. Using the hashtag #LupusTaughtMe, can you reveal some other life lessons you've picked up while living with Lupus and/or chronic illness? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624408865602-RUZ4Z1H45A1CX1L72ZW4/LC+Lupus+Taught+Me+2021.png #lupusChat - Life Lessons | #LupusTaughtMe - Make it stand out Life Lessons #LupusTaughtMe May 30th - 3PM EST https://www.lupuschat.org/lupuschat/2021/5/31/title-ye3wg monthly 0.5 2021-09-17 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235539714-N87ZGSSV01XR3356TAOY/5.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q5: What role does complementary/natural medicine have in your overall health care? How does bias in healthcare impact your use of these care methods? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235532356-0UQXWWF23SR9R1OXNIWM/3.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q3: In your opinion, what are some changes in society and medicine that could lessen health disparities and contribute to health equity? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624234683535-XJH1EC5PV3F4SR1CC9MK/LC+Advocate+For+Lupus+2021+%281%29.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Highlighting Health Disparities #AdvocateForLupus May 23rd - 3 PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235543134-47YS0RDJC5N1I14U9IO1/6.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q6: Using the hashtag #AdvocateForLupus, voice your thoughts on health disparities and access to care issues that you would like to see changed today or in the near future https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235528532-YSJQRI8XVU1PJ4ZTSOU8/2.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q2: In what ways has lack of access to preventative care and/or bias in healthcare impacted outcomes for patients? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623291005380-1R8SSTXJ65B5XXNFYH64/selfcare+gif.gif #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235515914-LAE9E2AWV6TLJFLPDOUL/1.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q1: What are some examples of health disparities and socioeconomic barriers to healthcare? What is health equity? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624497001836-83D1S26BSOOZ9P4I9BWW/20210620_220016.jpeg #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out The #LupusChat Influencers https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624235536120-JE3Q5X33FMPTN9T6ZO9G/4.png #lupusChat - Highlighting Health Disparities | #AdvocateForLupus - Make it stand out Q4: How do disparities and the lack of diversity of patients and scientists in research influence the treatments available for us? https://www.lupuschat.org/lupuschat/2021/5/31/title-neydz monthly 0.5 2021-07-08 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623290858499-Z0UW3AKGK2S00E5O1CPO/LC+Lupus+Feels+Like+2021.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Patient Perspectives #LupusFeelsLike May 16th - 3 PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624207096941-DQ9ZNP09Z9RHYMVQ56XM/3.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q3. Share and debunk a myth that people have about what it's like to live with lupus, chronic illness, and/or a disability. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624232928327-Z3JA3WT48QHAVGQL8Q2D/selfcare+gif.gif #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624206824779-OFW2IXC5HRJTM4QOQIYV/4.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q4: Do you feel that past and current awareness campaigns adequately represent your experience with lupus? What would make them resonate more with you? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624207072547-MCPS0UNBLXM8ANYKO6IZ/1.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q1. How do you feel about #LupusAwarenessMonth? Is it something you look forward to? Do you celebrate it? Hate it? Explain. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624207121717-4FKO6KKGTWEO50T27HO6/6.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q6. If you're comfortable, using the hashtag #LupusFeelsLike please share in your own words what it's like to live with Lupus. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624207086095-D4DGH61PNPYO5V6FEEYV/2.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q2. Can you explain what a good day with Lupus feels like to you? What does a bad day feel like? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624207112918-BQTIZWJIQXVYZN9Z8G6B/5.png #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out Q5. As we talk about our own life with lupus, how can we be mindful to not compare or dismiss the experiences of both ourselves and others living with chronic illness? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1624205777930-Z0SOQ4VLUD2SCNSYXLMY/20210620_121432.jpg #lupusChat - Patient Perspectives | #LupusFeelsLike - Make it stand out The #LupusChat Influencers https://www.lupuschat.org/lupuschat/2021/5/31/title-yk226 monthly 0.5 2021-06-23 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623598068661-1PCFGGCJHXAKFU25K096/selfcare+gif.gif #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623602604260-7XEVXLBGIV2V8VXQ5UTO/20210606_091429.jpg #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out The #LupusChat influencers https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773380474-9DI0MNBBQJ7EUIVEZFWS/6.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q6. Using the hashtag #OurLupusCommunity, please share how you will continue to honor your community support and share the impact that they've had on your life? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773149096-Y8X62VOJS76JJSQKUW75/LC+Our+Lupus+Community+2021.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Honoring the People Who Support Us #OurLupusCommunity May 9th - 3PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773366399-KDZSNJW1G0UFLDIPDOJP/3.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q3. How can we take care of and extend our support to our care partners and those who support us? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773359988-1I80E14CL2QTMI9ZIBXY/2.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q2. What do you think could be improved when it comes to support within the Lupus and chronic illness community? What currently works for you? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773376390-2P9SKFHJAIF52E1LZJNR/5.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q5. Shout out someone and let them know how much you appreciate their love and support. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773348577-O0W4I3UT8K0IKDVTKPAQ/1.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q1. Where do you get support from and how have those people, groups, and/or communities affected your life? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622773372268-I8LZF7X45J9ZC7DNDUVO/4.png #lupusChat - Honoring the People Who Support Us | #OurLupusCommunity - Make it stand out Q4. Do you feel you're getting enough support from your healthcare team about managing your health outside of the doctor's office? Why or why not? https://www.lupuschat.org/lupuschat/2021/5/31/title-sxnms monthly 0.5 2021-07-08 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604829917-V63I7P2TQPUF8OYNWNSV/5.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q5. Is there a particular aspect of your chronic illness that you'd want new research studies to look into? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604848275-ZBQ89JO8XRJY6PGVT8ZQ/6.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q6. Using the hashtag #LupusResearchMatters, can you share how new research would improve your quality of life? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622599746676-UH5HZ4OIMVPVAUVIO0YD/LC+Lupus+Research+Matters+2021.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out More Research, More Treatment #LupusResearchMatters May 2nd - 3PM EST https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604692073-Y44RTZ2A65W2KBK4K6GR/3.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q3. What are some ways that patients can help advance research? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604532924-J62N5K04RL0V8HS3U6R2/1.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q1. What is the key point of research? How does it influence healthcare and affect our lives and overall health? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604672589-8NU8SICBNKAX3EXZL5JH/2.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q2. In what ways has progress in research changed your perception of certain aspects of lupus and chronic illness? Please share examples if you can. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622604806698-4GTSNIF29JI31OVNADFD/4.png #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out Q4. Have you noticed a difference in how your treatment or disease activity was monitored, from when you were first diagnosed until now? How do you think lupus research has influenced this? https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1623289161547-UNJWS16VR59L1W578NN5/selfcare+gif.gif #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out It is absolutely okay to take time for self care. You can’t do things well if you don’t feel well. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1622984808724-AYXI32X9N2LWVSZM890U/20210606_090426.jpg #lupusChat - More Research, More Treatment | #LupusResearchMatters - Make it stand out The #LupusChat Influencers https://www.lupuschat.org/lupuschat/2017/11/22/acknowledging-our-emotions-lupusfeelslike monthly 0.5 2019-05-01 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556685203101-9E4ULWC9HCN1XNJ743ZQ/4-30-LC.png #lupusChat - Acknowledging Our Emotions: #LupusFeelsLike #Image description: “Acknowledging Our Emotions: #LupusFeelsLike - Join us on Twitter, (@Lupus_Chat) at 3 PM Eastern Time on April 30th for a heart-to-heart discussion focused on accepting our emotions & acknowledging how Lupus makes us feel.” https://www.lupuschat.org/lupuschat/2017/11/22/understanding-sjogrens-chroniccoalition monthly 0.5 2019-05-01 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556688704902-KB66DGD89O89GT9RO8RN/Understanding+Sjogrens+TW+Promo.png #lupusChat - Understanding Sjogren's | #ChronicCoalition Image description: “Understanding Sjogren’s - Join us on Twitter, (Lupus_Chat) at 3 PM Eastern Time on April 23rd for a ‘Chronic Coalition’ discussion on Sjogren’s. W'ell be joined by special guest host, the Sjogren’s Syndrome Foundation to help educate and celebrate Sjogren’s Awareness month.” https://www.lupuschat.org/lupuschat/2017/11/22/support-groups-pros-cons-why-we-need-them monthly 0.5 2021-05-31 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1556688619991-UGADEKSP2710P6K3NXG9/Supp+Groups-+TW.png #lupusChat - Support Groups: Pros, Cons & Why We Need Them Image description: “Support Groups: Pros, Cons, and Why We Need Them - Welcome to our discussion on Support Groups to explore why they are such an important resource for caregivers and those living with lupus.” https://www.lupuschat.org/lupuschat/category/Tweetchat monthly 0.5 https://www.lupuschat.org/lupuschat/tag/%23lupusfeelslike monthly 0.5 https://www.lupuschat.org/lupuschat/tag/support+group monthly 0.5 https://www.lupuschat.org/lupuschat/tag/lupus+research monthly 0.5 https://www.lupuschat.org/lupuschat/tag/tweetchat monthly 0.5 https://www.lupuschat.org/lupuschat/tag/lupus+nephritis monthly 0.5 https://www.lupuschat.org/lupuschat/tag/community monthly 0.5 https://www.lupuschat.org/lupuschat/tag/lupus monthly 0.5 https://www.lupuschat.org/lupuschat/tag/suncare monthly 0.5 https://www.lupuschat.org/lupuschat/tag/sun+protection monthly 0.5 https://www.lupuschat.org/forum daily 0.75 2019-05-01 https://www.lupuschat.org/contact-us daily 0.75 2017-11-22 https://www.lupuschat.org/about-1 daily 0.75 2023-04-16 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511371628751-Y9I78FF0GRGLH7VZBDFL/lupuschat_candybrown.PNG About Us - Candy Brown Facebook Community Manager Candy Brown is the LupusChat Facebook Community Manager. She moderates the community's Facebook page and its private group's forum. Candy is also a member of the Lupus Research Alliance’s Multicultural Task Force and is on the New Jersey committee for their Walk to Cure Lupus. Candy was diagnosed with SLE in April of 2008. Three months later she was diagnosed with Lupus Nephritis and Multiple Cognitive Tissue Disorder. Since neither of these diagnoses was familiar to her or her family she embarked on an effort to find out as much as she could about these chronic diseases. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511371678178-FZX3MU9ONO6GAPUD7EFV/lupuschat_tiffanympeterson.jpg About Us - Tiffany Peterson Founder, Chief Executive Officer & Host of LupusChat Tiffany Peterson is the Founder and Chief Executive Officer of LupusChat, a patient-driven online community established in 2012, designed to educate all entities in the healthcare sector thus sparking innovative discussions and breaking restrictive barriers between patients and various healthcare stakeholders. Tiffany is a New York City-based patient advocate whose inspiration arose from her own personal battles within the healthcare system following her diagnosis of systemic lupus erythematosus and lupus nephritis. She is a longstanding member of the Society for Participatory Medicine educating both patients and healthcare professionals how to implement this mindset into their practices. Proud member of The Walking Gallery, she speaks across the country on the importance of patient-centered care. She has presented at numerous prestigious health conferences such as Health Datapalooza, ONC National Health IT Consumer Summit, Medstartr Momentum, Health 2.0 NYC, and ePharma. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511371756852-YM7JKV2ZEYQKO6UGH7FF/lupuschat_christelefelix.jpg About Us - Christele Felix Chief Operating Officer & Co-Host of LupusChat Christele Felix is the Chief Operating Officer of LupusChat and oversees the various projects and initiatives of the organization. Since joining the #LupusChat team as a co-host, she has been actively involved in the development of the bi-weekly conversations, selecting discussion topics relevant to our patient community, and has worked with legislators and various members of the healthcare community, including doctors, data analysts, researchers, and patients to ensure that the Patient voice continues to be at the forefront in the fight against Lupus. Christele is a native of Haiti who was diagnosed with SLE in April 2007. Her Lupus diagnosis and the impact of its symptoms threatened but thankfully did not end her college career. From her background in Science, Christele has a strong interest and passion in clinical research. It is because of that passion, that she was awarded a Sigma XI Award for Excellence in Research in Biology. To this day, she continues to allow her enthusiasm for clinical research fuel her life’s work. Christele is involved with the Lupus Research Alliance as the co-Chair of their Young Leadership Board’s Social Media committee and a member of their Multicultural Task Force; She is also a Lupus Foundation of America Ambassador. Additionally, Christele currently works as an activity specialist for a non-profit program that introduces low-income children to topics in Science, Math, Engineering, and Technology (STEM). She plans to pursue a career in clinical research where she will combine her patient experience and her academic expertise to make sure the perspective of patients is taken into account in medical research. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511372303333-F73I8732SOHQN51DSL1A/lupuschat_ourteam.jpeg About Us https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511371734456-29Q8QH6ES2FODTOM22F3/lupuschat_elizabethsantacruz.jpg About Us - Elizabeth SantaCruz Director of Outreach & Communication, Co-Host of LupusChat Elizabeth SantaCruz is Director of Outreach & Communications at LupusChat. As a mother of two from Kearny NJ, Elizabeth became a passionate advocate for raising Lupus Awareness after her daughter was diagnosed with lupus at the young age of 9. As a parent and caregiver, she was invited by The Lupus Research Alliance to participate as a Lupus Advocate at the Annual Advocacy Meeting and Hill Day in Washington D.C. to meet with Congressional members and their staff to discuss the support for Lupus research. Elizabeth also has had the honor of being interviewed by Emmy-Award winning Brenda Blackmon from PIX11 News & Nilda Rosario from Telemundo47 to discuss how Lupus affects children. Awareness-Conciencia, a bilingual lupus awareness book created by Brenda Blackmon, was released in May 2017 and Elizabeth’s daughter’s story is part of the book. Elizabeth believes that lupus education is crucial in the community because it establishes people’s awareness and knowledge. These are necessities in order to change and improve educational settings such as school health awareness programs which can effectively impact future generations. https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1511371696415-NAJUY9QZ1ZPP5COL0M0V/lupuschat_carleneharrison.JPG About Us - Carly Harrison Chief Research & Innovation Officer & Co-Host of LupusChat Carly Harrison is Chief Research & Innovation Officer & Co-Host of LupusChat. In her role as Chief Research Officer, Carly is responsible for the development, oversight, and implementation of all research related initiatives. Carly also assists with the administration and management of LupusChat’s daily activities. She strives to continue educating others about Lupus and breaking down barriers within the healthcare system to enhance patient representation and drive policy change. Diagnosed with Lupus and Raynaud's in 2011, Carly is a Patient Advocate currently working to make an impactful change in the healthcare sector. Carly strives to educate the masses on these two diseases all while providing support for other patients. With academic training in the physical (biochemistry, human genetics) and social sciences, Carly not only approaches Lupus from a scientific standpoint but also works to help patients manage the socioeconomic effects that being chronically ill can have on one’s life. She has worked with legislators, physicians, patients, community leaders, and health technology experts toward improving patient care and ensuring that patients (as prominent stakeholders) are present in every step of the healthcare process. When not advocating for patients, Carly enjoys playing piano, reading novels and scientific journals, practicing yoga and spending time with family and friends. https://www.lupuschat.org/blog-home daily 0.75 2020-04-14 https://www.lupuschat.org/lupuschat-1 daily 0.75 2021-06-29 https://www.lupuschat.org/resources daily 0.75 2021-05-19 https://images.squarespace-cdn.com/content/v1/5980fa08ff7c50042382a40b/1606094309988-KE1SNVTQH672UB1H1ZKZ/LADA.jpg Resources https://www.lupuschat.org/tweetchat-guidelines daily 0.75 2021-10-13