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Category: Community Blog

New Survey Shows Education and Communication Gaps in Lupus Nephritis Care

1 in 2 Lupus Nephritis Patients Don’t Know They Have Lupus New York, NY– December 7, 2020.  Significant gaps in education and communication among patients and physicians pose barriers to lupus nephritis (LN) care, according to results of two companion surveys conducted by the National Kidney Foundation (NKF) and the Lupus Research Alliance (LRA). Half […] Read More

Hope Comes from Research!

September 25, 2019 Since being diagnosed with Systemic Lupus Erythematosus back in 2017, my world has turned upside down. The physical toll on my body has been incredibly damaging, but what I think is more important to talk about here is the mental and emotional toll that everyone affected by this disease goes through. I […] Read More

Writer Previews Play About Her Mom’s Life with Lupus

July 18, 2019 When I set out to write a solo show in the winter of 2017, I just wanted to see if I could. I had spent the previous summer working at a professional theater festival, where a popular refrain was, “Create your own opportunities.” Back in college, when I saw a Solo Performance […] Read More

Make it Ecstatically Loud!

Blessed by an auto-immune disease at the age of 11, being different wasn’t really an option at the time, but a fact I had to embrace at a very young age. They call it the silent disease or the silent killer so I decided to make it ecstatically loud while passing around everything I learned […] Read More

Amanda Greene Advises on Talking About Your Lupus

October 18, 2018 There are few things that a person living with lupus can control.  The how and when we share our healthcare journey with others is one that we as people living with lupus do have control over.  Each person living with lupus is unique and after 36 years as a lupus patient, I […] Read More

Johnny Gaffney Discusses Unconditional Love

January 24, 2019 When I heard of my sister’s lupus diagnosis I was confused about its origins and its implications, and to this day I still am. I dove into internet wormholes with WebMd articles, twitter posts and online support groups published by young people living with lupus. All of this information without an understanding […] Read More

Sheena M. Ogando, MD, RhMSUS, RYS200

Hello my precious Lupus-ees! My name is Sheena Ogando, I’m a born and raised New Yorker, part-time yoga instructor, and full-time rheumatologist working in California.  I have worked with the Lupus Research Alliance since 2015 and am coming home to New York for the 2018 NYC Marathon, running for the organization’s Team Life Without Lupus.  […] Read More

It’s World Lupus Awareness Day

It’s World Lupus Awareness Day – when our community comes together to recognize and energize people battling lupus around the globe while educating and motivating others to lend their support. What better day to join our new community Forum – a place to unite with YOUR community – people who are facing the same struggles. […] Read More