Living with Lupus最新文献

LL-05 Fabulupus: a social media evaluation Fabulupus:一个社交媒体评价

Living with Lupus Pub Date : 2018-08-01 DOI: 10.1136/LUPUS-2018-LSM.115

Jodie Nimigon-Young, J. Kundapur

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LL-09 Childhood arthritis and rheumatology research alliance/lupus foundation of america childhood onset systemic lupus erythematosus research prioritization survey LL-09儿童关节炎和风湿病研究联盟/美国狼疮基金会儿童发病系统性红斑狼疮研究优先调查

Living with Lupus Pub Date : 2018-08-01 DOI: 10.1136/LUPUS-2018-LSM.119

S. Ardoin, Lyna Merzog, A. Hersh

{"title":"LL-09 Childhood arthritis and rheumatology research alliance/lupus foundation of america childhood onset systemic lupus erythematosus research prioritization survey","authors":"S. Ardoin, Lyna Merzog, A. Hersh","doi":"10.1136/LUPUS-2018-LSM.119","DOIUrl":"https://doi.org/10.1136/LUPUS-2018-LSM.119","url":null,"abstract":"Background Compared to adult-onset SLE, childhood onset SLE (cSLE) tends to present with more severe disease and more widespread organ involvement. Additionally, cSLE associated with higher mortality and damage accrual. However, despite the severity of the disease few commonly used SLE medications have been rigorously studied in children, and important knowledge gaps remain concerning the epidemiology, natural history, pathophysiology, genetics and optimal treatment of cSLE. In order to identify high priority areas for future research in cSLE, the Lupus Foundation of America (LFA) and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) partnered to perform and cSLE research prioritization survey. Methods Using information from the 2013 CARRA Lupus Group Research Prioritization Exercise and the most recent LFA Parent and Caregiver Survey, we identified areas of clinical and research need in cSLE. A work group was assembled to develop and refine survey questions which ask clinicians and researchers to rank research topics that are most urgent advance patient outcomes. The survey was programmed using Qualtrics software. The survey was beta tested by a separate group of clinicians and researchers. The proposed survey administration was deemed not to be human subjects research by the University of Utah and Nationwide Children’s Institutional Review Boards. Descriptive statistics will be used to analyze survey responses. Results The survey will be administered to members of CARRA and also to collaborators in the inflammatory skin disease interest group of the Pediatric Dermatology Research Association (PeDRA) and the glomerulonephritis interest group of the Midwestern Pediatric Nephrology Consortium (MWPNC). Together, these organizations include over 800 clinicians and researchers. Conclusions The results of the CARRA/LFA Research Prioritization Survey will be used to guide funding programs for cSLE within the Lupus Foundation of America, to share with potential donors, and to use in advocacy efforts promoting state and federal funding for cSLE. Acknowledgements This study is supported by funding the Lupus Foundation of America and the Childhood Arthritis and Rheumatology Research Alliance.","PeriodicalId":400531,"journal":{"name":"Living with Lupus","volume":"292 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2018-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"117338230","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

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LL-04 Advocacy matters creatively spreading lupus awareness and education 倡导问题创造性地传播狼疮意识和教育

Living with Lupus Pub Date : 2018-08-01 DOI: 10.1136/LUPUS-2018-LSM.114

Deidre Gee Baptista, Kirsten Gee Maeda

{"title":"LL-04 Advocacy matters creatively spreading lupus awareness and education","authors":"Deidre Gee Baptista, Kirsten Gee Maeda","doi":"10.1136/LUPUS-2018-LSM.114","DOIUrl":"https://doi.org/10.1136/LUPUS-2018-LSM.114","url":null,"abstract":"Background ‘The Gee Twins for Lupus’ Butterfly pin project served as a way to spread lupus knowledge through grassroots advocacy efforts. This project’s goal was to further awareness, education and advocacy, providing hope and optimism. Over 1000 handcrafted awareness pins were created and shared with lupus communities. The goal was to design a visually meaningful May awareness pin that represented hope for patients, sisters’ synergy and awareness for racial disparities. ‘Asian/Pacific Islanders and Hispanics of any race are more likely to be affected by the autoimmune disease lupus, compared with Whites (regardless of Hispanic ethnicity).’ Methods Patient advocates participated in lupus events sharing their story and awareness pins at national, state, county, and local levels. Advocacy helps to ensure that the whole patient is supported. Gaining resilience, optimism, and coping strategies; patients can become empowered when getting involved in lupus communities. The handcrafted butterfly pins designed purposefully in Chinese brocade fabric in (orange and purple) chosen to bridge lupus communities together to symbolize hope. The pins have evoked engaging lupus conversations from racial disparities, treatments to the importance of nutrition, and exercise while providing hope and optimism. The pin project has symbolized the sister’s grassroot advocacy work by raising awareness wherever they go. Results Using collaborative patient advocate voices and a creative project, Lupus awareness and education increased. ‘The Gee Twins for Lupus’ efforts resulted in speaking engagements, featured in newspaper articles, and on social media platforms generated awareness. Advocates became a resource for patients connecting them to lupus organizations. Advocacy work and patient engagement resulted in grants, large donor contributions, permanent outdoor butterfly tile mural/garden, increased education for racial disparities and collaborative projects. Refer to figure 1 for project results. Creative patient advocates utilized their creative talents to expand the voice and reach of lupus awareness. Conclusion Advocating matters. Utilizing creative twin synergy has elevated awareness. Featured articles and social media has spread awareness. For example, University of California Irvine’s 2018 Winter magazine, was sent to UC Irvine’s community. The project is an example of how impactful advocacy can be. Continued projects include: working with lupus warriors, researchers, industry leaders helping to solve the complexity of lupus. Aiding racial disparity needs more grassroot voices and hoping to further global reach. It is through compassion and love that awareness was spread as brave patients are inspirational. Reference . Lupus Impacts Asian/Pacific Islanders and Hispanics at Alarming Rates. (2017, September 11). Retrieved from https://www.lupus.org/research-news/entry/lupus-impacts-asian-pacific-islanders-and-hispanics-at-alarming-rates Acknowledgements The authors wo","PeriodicalId":400531,"journal":{"name":"Living with Lupus","volume":"310 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2018-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132440120","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

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Chapter Six. Suffering 第六章。痛苦

Living with Lupus Pub Date : 2013-12-31 DOI: 10.7560/744653-007

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Chapter Five. Loss 第五章。损失

Living with Lupus Pub Date : 2013-12-31 DOI: 10.7560/744653-006

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Chapter Two. Cuenca, Lupus, and Chronic Illness 第二章。昆卡、狼疮和慢性病

Living with Lupus Pub Date : 2013-12-31 DOI: 10.7560/744653-003

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Chapter Three. Health Care in Ecuador 第三章。厄瓜多尔的卫生保健

Living with Lupus Pub Date : 2013-12-31 DOI: 10.7560/744653-004