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  • Lupus
    Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. Lupus affects about 5 in 10,000 people. Most often, lupus starts in people in their 20s and 30s. It occurs 10 times more often in women than in men.
Submitted by PatientsEngage on 15 January 2015

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. Lupus affects about 5 in 10,000 people. 

Who is affected by lupus?

Most often, lupus starts in people in their 20s and 30s. It occurs 10 times more often in women than in men. The disease is more common in some ethnic groups, mainly blacks and Asians. Other risk factors include exposure to sunlight, certain medications, infection with Epstein-Barr virus, and exposure to certain chemicals. In Asia, countries such as *India and Japan have a lower incidence of lupus whereas Shanghai has higher prevalence.

*Osio-Salido E, Manapat-Reyes H, Epidemiology of systemic lupus erythematosus in Asia, Lupus, 2010 Oct;19(12):1365-73.

Air pollution, especially the particulate matter released when fossil fuels and other materials are burned, has been associated with lupus risk.

 

Condition

Stories

  • A young woman in white top sitting sideways framed with a purple border with the lupus butterfly symbol and the the text Living with Lupus and patientsengage logo
    लुपस को जीवन का एक अंश मानें
    26 वर्षीय श्रेया शुक्ला, कानपुर (उत्तर प्रदेश) में अपनी खुद की डिजिटल मार्केटिंग एजेंसी चलाती हैं। उन्हें जुवेनाइल लुपस (बचपन में होने वाला लुपस) है। इस लेख में वे साझा करती हैं कि कम उम्र में लुपस होने का उनका अनुभव साझा क्या था – इस में उनके विलंबित और गलत निदान से लेकर अपनी स्थिति का प्रबंधन और स्वतंत्रता प्राप्त करने की यात्रा और अनेक जटिलताओं का वर्णन शामिल है। लक्षण और निदान नवंबर 2008 में, जब मैं 12 साल की थी, मुझे शरीर में दर्द, जोड़ों में दर्द और हल्का बुखार हुआ, और जब मैंने अपने…
  • A stock pic of a side profile of a woman against a sunset and the text Living with Lupus
    "Lupies Need Much Strength And Mental Support"
    Amita*, a 20 year old working woman from Mumbai, with a diagnosis of Juvenile Lupus shares her experience of dealing with this condition, the emotional and financial toll it took on her and how she has come to realise the importance of medication adherence.  Symptoms, Diagnosis and Treatment It was around 2018 when I was pursuing my SSC and one day when I came home my mom saw a bald patch in my hair. Like a bunch of hair somebody had cut it off. So we panicked and after visiting a…
  • Young woman with Lupus in a hat in profile against a lake and mountains
    Manage Lupus In Partnership With A Rheumatologist
    Debalina, a 25 year old student based in Kolkata, with a delayed diagnosis of Juvenile Lupus, no referral to a Rheumatologist and potentially inadequate treatment plan for 10 long years. She shares her experience of the complexities of this condition and the need for Lupus awareness for timely and appropriate treatment. Diagnosis & Treatment I had no specific symptoms till I was 13. Till about 2008, I experienced headache from time to time when exposed to sunlight. Doctors thought I had a…
  • Silhouette of a young woman dancing and the sun shining through her scarf dupatta and the text living with lupus
    Lupies: Looks Are Not Everything
    Aqsa, a 17 year old from Mumbai, shares her journey of navigating Juvenile Lupus as a young teenager, including understanding the disease and seeking the right treatment. Key learnings are accepting the side effects of medications and the importance of family and social support. Symptoms, Diagnosis and Treatment I was first diagnosed when I was 12-13 years old and in 7th grade. I had swelling on my feet, but was too young to understand the disease. I went to Judo classes and had joint pain,…
  • A young woman with Lupus wearing specs and a grey full sleeves shirt standing in front of a water body
    Lupus Has Made Me A Stronger Person
    Thanusree, 27 years old from Chennai has lived with a Juvenile Lupus diagnosis since 2010. She shares her experience of the challenges of getting a diagnosis and managing the emotional ups and downs of SLE. Symptoms and Diagnosis In 2010, during my 10th grade when I was 14, I had a blood clot and was advised a blood test which we took lightly and did after 2 weeks. However the day after the blood test, the lab called me and told my parents that I need to be admitted immediately in the ICU as…
  • Stock pic of mother and child on a beach against a sunset with overlay text Living with Lupus
    "My Daughter Was Diagnosed With Lupus At 5 Years"
    Priya, an HR professional, based in Thiruvanathapuram, Kerala and mother to Divya (names changed to maintain anonymity), 9 year old with a diagnosis of Juvenile Lupus shares their experience of the complexities of this condition in a young child and how she tries to let her daughter maintain a "normal" routine.  Symptoms and Diagnosis: My daughter Divya was born in 2014. She was first diagnosed with Lupus SLE on June 15 2019 (her grandmother’s birthday) when she was 5 years old. Divya was…
  • A young woman in white top sitting sideways framed with a purple border with the lupus butterfly symbol and the the text Living with Lupus and patientsengage logo
    Treat Lupus As A Phase Of Life
    Shreya Shukla, 26 years, runs her own Digital Marketing Agency, based in Kanpur, UP and lives with a diagnosis of Juvenile Lupus. She shares her experience of the complexities of Lupus at such a young age, from delayed and wrong diagnosis to managing the condition and her journey to independence. Symptoms and Diagnosis In November 2008, when I was 12, I had body ache, joint pain and mild fever and when I consulted my doctor, I was treated first for Chikungunya. Prior to this in 2007, I had had…
  • Picture of Hrishita, a young woman in a pink and blue kurta framed in a purple frame with the text Living with Lupus
    Living With Lupus Is Complicated
    Hrishita Gupta, 23 years old is a teacher in Siliguri and has lived with a Juvenile Lupus diagnosis since 2014. She shares her experience of managing this complicated condition and how she copes with Systemic Lupus Erythematosus (SLE). Diagnosis I had fever for very long time and in 2014, at the age of 14, I was advised a Tuberculosis test which was mild positive and I was treated for TB for 3 months. In 2013 I had developed joint pain which may have been due to Arthritis, but that was never…
  • Alphonse Roy, Lupus and Sjogrens patient with text on blue strip : Living with invisible illnesses
    Living with Lupus and Sjogrens
    A. Alphonse Prabhu Roy, 60, was diagnosed at a young age with two chronic autoimmune disorders, Lupus and Sjogren’s Syndrome, with multiple complex symptoms, the most challenging being dry mouth and brain fog. Narrating his experience, he said both illnesses need to be handled carefully or else they can severely impact work and home. You have been the general manager of a public sector oil company for many years. Please could you tell us a bit about your current work and where do you live?…
  • Young woman with specs in front of a leafy plant
    Strange Symptoms of Idiopathic Intracranial Hypertension
    Suzanne Sangi, 26, was diagnosed with a rare neurological condition called Idiopathic Intracranial Hypertension causing severe headaches, ringing in her ears with a daunting possibility of going blind. Here she talks about her treatment and renewed will to live thoughtfully and hopefully. I often wondered to myself, things couldn’t get any worse than they were -- I’d been living with a chronic illness called Lupus for more than three years now. My kidneys had been aggressively damaged and I’ve…