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      Winter vaccinations!   11/03/2016

      It is very important for people with chronic diseases, such as SLE,and for those people taking corticosteroids and immunosuppressants, including chemotherapy drugs, should go to their doctor to be immunised against flu. Flu is not a bad cold! It can be dangerous. Apart from the annual flu jab, ask your doctor about the pneumovax vaccine which will help prevent serious problems with the lungs. Those with asthma should also ask about the various kinds of vaccines available. Finally, Herpes Zoster infections can lead to the risk of strokes in certain populations which include, rheumatoid arthritis and SLE. There is a new post with information, along with a video. Be well! Ros
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      Blogs!   03/27/2017

      All registered Members can write their own Blog here! Just click on Blog and select a title!
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      Sign Up & Date of Birth   08/26/2017

      When you Sign Up,  Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.                                                
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      GHIC   09/08/2017

      I am excited to announce that LUpus Patients Understanding & Support (LUPUS) is linking with The Graham Hughes International Charity (GHIC). This means I will be posting articles from Professor Hughes here. About 25% of those with SLE also have Hughes Syndrome. As more research is being done, its findings are extremely important for those who have this condition. Like SLE, diagnosis can take a very long time.

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  1. Selena Gomez

    Selena Gomez reveals kidney transplant, best friend was donor FROM THE TOPICENTERTAINMENT 14/09/17 Selena Gomez has revealed that she had a kidney transplant operation this summer linked to her lupus. In an Instagram post, the singer says that her friend Francia Raisa donated an organ to her and says she wanted to explain why fans hadn't heard much from her despite having new music out. "So I found out I needed to get a kidney transplant due to my Lupus and was recovering," she writes. "It was what I needed to do for my overall health." Image captionSelena Gomez has also posted photos of her scar from the kidney transplant operation Selena Gomez also thanked her friend, The Secret Life of the American Teenager actress Francia Raisa, in her Instagram post. Morerelated stories Selena Gomez: Social media isn't real life When celebrities go out in disguise Selena Gomez had lupus but what is it? "There aren't words to describe how I can possibly thank my beautiful friend Francia Raisa," she writes. "She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed. I love you so much sis." Image captionSelena Gomez helped her friend Francia Raisa out in 2014 at the Annual Unlikely Heroes awards in LA, which she was hosting Selena Gomez released the first single from her new untitled album, It Ain't Me featuring Kygo, in March. Since then Bad Liar and Fetish have come out but she hasn't been out promoting the tracks because of her operation. Her first public appearance after recovering from the surgery was in New York with boyfriend The Weeknd last Friday night. She also took time off social media last year to deal with panic attacks, anxiety and depression. The 25-year-old says her ongoing mental health problems are a side-effect of her lupus diagnosis last year. Image captionSelena Gomez appeared in Radio 1's Live Lounge in 2015 to promote her album, Revival Lupus affects the body's immune system. The symptoms of the disease include extreme tiredness, rashes (especially on the face, wrists and hands), joint pain and swelling. In her post, she says not enough is known about the condition. "Lupus continues to be very misunderstood but progress is being made." Find us on Instagram at BBCNewsbeat and follow us on Snapchat, search for bbc_newsbeat http://www.bbc.co.uk/newsbeat/article/41268256/selena-gomez-reveals-kidney-transplant-best-friend-was-donor
  2. Furie discusses SLE pathogenesis April 27, 2016 CHICAGO — At the American College of Rheumatology State-of-the-Art Clinical Symposium, Richard A. Furie, MD, compared the number of “wins” in research into treatments for systemic lupus erythematosus to a losing season for a baseball team. “But, we have had some highlights,” Furie, an investigator at The Feinstein Institute for Medical Research and chief of the Division of Rheumatology at Northwell Health, said. “I think the introduction of mycophenolate mofetil has been great. It has now become pretty much the standard of care for patients with lupus nephritis.” Furie presented a review of data that showed an improvement in response rates with mycophenolate mofetil compared with cyclophosphamide or azathioprine in studies that re-randomized patients to different treatments after showing a response to the first-line treatment. The approval of belimumab was important for patients with systemic lupus erythematosus (SLE), but Furie added resurgence in the use of hydroxychloroquine has improved survival and is effective for many SLE patients with rash or arthritis. In addition, the medication reduces lipid levels and promotes strong bones. “The dogma is now that every lupus patient should be on hydroxychloroquine,” Furie said. However, he argued, “We are not doing a good job if you look at data.” Response rates to new treatments, which include background therapy with corticosteroids, are often 50% or lower, according to Furie. “We are down in the single digits for the abatacept studies,” Furie said. “So we have major unmet needs. I think the biggest need is for lupus nephritis. For those with severe renal disease, we need better drugs. We need safer drugs. We need more efficacious drugs.” Organ damage prevention is key, he said, whether the damage is related to disease progression or side effects of the medication. The pathogenesis of SLE, according to Furie, “starts with a genetically susceptive host, and there has to be an environmental trigger.” For some patients, the environmental trigger may be the sun, according to Furie, which can cause apoptosis of skin cells, the release of RNA and DNA, and activation of toll-like receptor-9 and RNA toll-like receptor-7. “The consequence of toll-like receptor signaling is the elaboration of a variety of cytokines, chief of which is interferon-alpha,” he said. The activation of T cells is a function of the adaptive immune cells involved in SLE, and interactions between B cells and T cells may be responsible for disease activity, according to Furie, and these have been, and will continue to be, targets for treatments of SLE. Reference: Furie RA. Recent advances in SLE treatment. Presented at: American College of Rheumatology State-of-the-Art Clinical Symposium; April 9-10, 2016; Chicago. Disclosures: Furie reports relationships with Pfizer, Amgen, Anthera, Biogenldec, BMS, BoehringerIngelheim, Celgene, Dynavax, Eli Lilly, Exagen, Genetech/Roche, GlaxoSmithKline, Medimmune, Novartis, Pfizer, Mallinckrodt Pharmaceuticals, Sanofi, Takeda, UCB, Abbvie, Alnylam, Biogenldec, BMS, BoehringerIngelheim , Celgene, Chugai, Eli Lilly, Estrela (Janssen), Exagen, Genetech/Roche, GlaxoSmithKline, Medimmune, Pfizer, Onyx, Mallinckrodt Pharmaceuticals, Regeneron, Sanofi, Takeda, UCB, Lupus Foundation of America, Lupus Alliance of America, SLE Foundation, Alliance for Lupus Research and The Lupus Academy.
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