Supporting People Living with Lupus Nephritis by Putting LN in Focus
Highlighting the inspiring journey of Juana, who is living with lupus and her sister, Estela, her caregiver.
People with autoimmune diseases and those who care for them inspire everything we do. Whether we are working to raise awareness about lupus nephritis through community events, advocating for greater patient access to resources and treatment, or supporting physician education and independent research, everyone at Aurinia is dedicated to changing the trajectory of autoimmune diseases.
Lupus is a chronic autoimmune disease that causes inflammation and pain in various areas of the body. Lupus nephritis, or LN, is a serious manifestation of lupus and causes inflammation of the kidneys. Lupus nephritis is estimated to impact almost 135,000 patients in the United States alone.
About 200,000-300,000 people live with SLE in the U.S. and about one-third of these people are diagnosed with lupus nephritis at the time of their SLE diagnosis. About 50 percent of all people with SLE may develop lupus nephritis. Black and Asian people with SLE are four times more likely to develop lupus nephritis and Hispanic people are approximately twice as likely to develop the disease compared to White people with SLE. Black and Hispanic people with SLE also tend to develop lupus nephritis earlier and have poorer outcomes, compared to White people with SLE.
The kidneys play a crucial role in maintaining overall health by removing toxic waste and excess fluid from the body through urine. In patients with lupus nephritis, the kidneys cannot function normally. Lupus nephritis may get worse over time and could lead to kidney failure, which is serious but treatable. If the kidneys fail, dialysis or a kidney transplant may be required.
Kidney problems can start around the same time that lupus symptoms appear, but often renal involvement does not cause any noticeable symptoms. This is why routine urine monitoring is an important part of managing patients living with lupus, because often the only way the renal involvement is initially detected is by detecting protein in the urine.
A lupus nephritis diagnosis is usually made by a nephrologist or a rheumatologist. The three most common tests used to diagnose lupus nephritis are a urine test, a blood test, and a kidney biopsy.
Treatment for lupus nephritis focuses on controlling kidney inflammation, helping to preserve kidney health, and preventing kidney flares. The types of treatment prescribed may depend on a number of factors, including the class of lupus nephritis. Early diagnosis and adherence to a treatment plan can help patients live their fullest lives and prevent long-term kidney damage.
Aurinia is dedicated to showing up for patients and care providers in myriad ways, from grants to programs that help patients navigate their healthcare journey to sponsoring and participating in events that help raise awareness and cultivate community. Read on to find out more about how we’re working to change what it means to live with an autoimmune disease.
The organizations listed below provide education and help create connections for people living with lupus and lupus nephritis. Please note that Aurinia does not endorse or monitor the activities and content of advocacy groups, their websites, or third-party online communities.
The ALL IN program and website provides information, resources, and support for those affected by lupus nephritis. If you would like to learn more, please visit www.allinforlupusnephritis.com.
The Get Uncomfortable campaign aims to educate and empower people living with LN to protect their kidneys by going to the doctor and completing routine testing to help prevent irreversible kidney damage. Visit www.getuncomfortable.com to find a doctor in your area, learn more about LN, and to get helpful tips on how to advocate for your kidney health.
The oldest and largest, independent kidney patient organization in the U.S., AAKP is dedicated to improving the lives and long-term outcomes of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early disease detection and the appropriate diagnosis of rare/genetic conditions; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation including artificial implantable and wearable kidneys; and the elimination of barriers for patient access to available treatment options.
The American Kidney Fund fights kidney disease on all fronts, working on behalf of Americans living with kidney disease, and the millions more at risk, with programs that support people wherever they are in their fight against kidney disease — from prevention through post-transplant living.
The Lupus and Allied Diseases Association (LADA) is a national organization dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet need by fostering collaboration among stakeholders, promoting unity in the community, supporting innovative advocacy, education, awareness and biomedical research program initiatives, and ensuring the patient viewpoint is present and heard in the healthcare, regulatory, policy and research communities.
The Lupus Foundation of America is a national organization devoted to improving the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.
Developed by the Lupus Foundation of America, the National Resource Center on Lupus provides up-to-date information and resources for the lupus community. Find support and connect through local chapters of the Lupus Foundation of America.
The Lupus Research Alliance is the largest nongovernmental, nonprofit funder of lupus research worldwide. The organization aims to transform treatment while advancing toward a cure by funding the most innovative lupus research; fostering diverse scientific talent; stimulating collaborations; and driving discovery toward better diagnostics, improved treatments and, ultimately, a cure for lupus. Because the Lupus Research Alliance’s Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
An organization in the U.S. dedicated to the awareness, prevention, and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.
Time is Nephrons is a lupus nephritis disease-state awareness campaign for healthcare professionals. The initiative aims to highlight the importance of active screening for early diagnosis to potentially minimize the impact on kidney function and improve long-term outcomes for every patient with LN. If you would like to learn more, please visit www.timeisnephrons.com.
Aurinia is committed to improving care for individuals with lupus nephritis and works at the national, state, and local levels to provide education, deliver screenings, and advocate for policies that remove healthcare barriers.