These data challenge established views regarding the rarity of Lupus in both men and women.
Systemic lupus erythematosus (often called Lupus or SLE) is an autoimmune disease. It typically affects women between the ages of 15 and 45. There are many things that can trigger Lupus, and symptoms can vary from patient to patient. It often causes cells in the body to become hyperactive and increase the production of autoantibodies.
People with Lupus are often very tired and have joint pain and rashes that are sensitive to sunlight. Lupus can also lead to damage in internal organs such as the kidneys (called Lupus nephritis) or the brain (called neuropsychiatric Lupus), which can be very severe forms of the disease.
WHAT DID THE AUTHORS HOPE TO FIND?
The authors wanted to get a picture of how common and severe Lupus is on the island of Crete. While the disease can be very different in different regions of the world, it is usually only estimated how common Lupus really is, and, therefore, this is an important study.
WHO WAS STUDIED?
The authors studied people living on Crete, a Mediterranean island with a homogeneous Caucasian population of approximately 650,000 people.
HOW WAS THE STUDY CONDUCTED?
The authors collected information about people with Lupus over a period of 1999–2013. This was done by searching medical archives at the Rheumatology Clinic in Iraklio, Crete. They also checked hospital administrative data, and worked with nephrology and dermatology clinics and private rheumatologists, and the Arthritis
Foundation of Crete. Possible cases of Lupus were checked by a Rheumatologist and the use of classification criteria. Face-to-face or phone interviews were done with everyone identified as having Lupus.
WHAT WERE THE MAIN FINDINGS OF THE STUDY?
The study worked out up-to-date information about the number of people in Crete who have Lupus (a figure called the prevalence), as well as how many new cases of Lupus there are in a given time period (the incidence).
The authors found that there were 123 cases of Lupus for every 100,000 people on the island. This was higher in urban as compared to rural regions on the island. On average, people were 43 years old at the time of diagnosis. The numbers were stable over time in women, but were increasing in men.
Nearly half of people with Lupus had only mild forms of the disease, but more than 30% had developed irreversible organ damage after an average of 7 years with the disease. Neuropsychiatric damage was particularly common (11.7%), whereas end-stage kidney disease occurred in 4.4% of people with Lupus nephritis.
For severe forms of lupus, there were stable numbers of people with kidney involvement (nephritis), whereas the number of people developing neuropsychiatric lupus increased over time.
ARE THESE FINDINGS NEW?
Yes, because the way the findings were worked out is new. The incidence and prevalence rates that the authors worked out are higher than previous estimates in Greece and in other countries in Europe and elsewhere. Lupus should no longer be considered a rare disease. Lupus may mostly affect women, yet it is increasingly recognised in men.
Importantly, and despite the milder forms of the disease, a considerable number of people develop severe disease that requires immunosuppressive therapy and which may cause organ damage, emphasising the need for early diagnosis and management.
WHAT ARE THE LIMITATIONS OF THE STUDY?
Despite the thorough case-finding method that was used, it is still possible that some cases might have not been captured.
WHAT DO THE AUTHORS PLAN ON DOING WITH THIS INFORMATION?
Based on the finding of increased cases of Lupus in urban versus rural regions, the authors are currently examining the disease frequency and differences according to where people live.
WHAT DOES THIS MEAN FOR ME?
If you have Lupus, it is important you have regular monitoring to make sure that any disease complications are caught early. This will increase your chances of avoiding organ damage.
Lupus is not as rare as we previously thought, and can affect people of all ages, and both men and women. If you are concerned that you may have Lupus, you should speak to your doctor.
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Date prepared: December 2017
Summary based on research article published on: 13th November 2017
From: Gergianaki, I. et al. Epidemiology and burden of systemic lupus erythematosus in a Southern European population: data from the community-based lupus registry of Crete, Greece. Ann Rheum Dis 2017;76:1992–2000. doi:annrheumdis-2017-211206
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