World Lupus Day 2021 – Make Lupus Visible

World Lupus Day is observed on every year on May 10th to create awareness of the devastating effects of lupus and encourage people who are battling the disease around the globe. Lupus can affect people of all nationalities, races, ethnicities, genders, and ages. The worldwide annual observance also concentrates on the requirement for improved patient healthcare services, increased research into the causes and cure for lupus. This would yield better epidemiological data on lupus globally that would further aid in earlier diagnosis and treatment of lupus.

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What is Lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). It occurs when the immune system (the body system that usually fights infections) attacks its healthy tissue instead (auto-antibodies against the body's tissues). This results in inflammation and pain in the multiple affected parts.

The most commonly affected organs are skin, joints, internal organs, like kidneys, heart, and brain. Systemic Lupus Erythematosus (SLE) is the most serious and common form of lupus that affects approximately 70% of all lupus cases.

The symptoms of SLE can greatly vary in severity and intensity, the most common one that includes debilitating fatigue, joint pain, butterfly-shaped facial skin rash.

There is no definitive cure for lupus. However, evidence suggests that lupus is caused due to hormonal, genetic, and environmental factors.

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Lupus – A Global Health Issue

Lupus affects people in all parts of the world. Globally, 40-100 people in every 100,000 suffer from this disease. Although it develops more frequently in a certain population than others, lupus prevails among people of all ages, races, ethnicities, and genders.

However, it principally affects women (9 in 10 patients are female), with the highest risk for onset of SLE during childbearing age. At a given time frame, around 5 million people are living with lupus annually.

As this potentially fatal autoimmune disease can damage virtually any part of the body, people suffer from even day-to-day activities.

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Social Stigma of Lupus

Many taboos exist around the disease, with prevailing misunderstandings of the condition. This hampers the timely diagnosis and management of the patients. The findings from a global survey of 16911 participants from 16 countries showed the following range of misconceptions and social stigmas associated with lupus:

• It was seen that 36% of the general population are not aware that lupus is a disease with 11% believing that lupus is a type of bacteria
• Among the population, the complications associated with lupus, such as kidney failure, anemia, or a heart attack was unknown to 51%
• Lupus is not a contagious disease. But 13% of them believed that having unprotected sex contributes to the development of lupus.
• And 44% feel 'less than comfortable' for sitting next to someone on a bus who has lupus with 47% feeling 'less than comfortable' for even shaking hands with someone with lupus.

The data thereby demonstrates that better education is mandatory around the signs and symptoms of the disease for more effective diagnosis, treatment, and management of lupus.

World Lupus Day – History!

World Lupus Day was first created by Lupus Canada in 2004 to raise awareness of this little-known disease that can have devastating effects on sufferers and their families. It was created to increase funding for research, provide better patient services, increase epidemiological data and raise awareness of the disease.

Ever since then, lupus organizations and scientific explorations around the globe have engaged in conducting varied activities on May 10 every year to raise awareness and educate the public about the symptoms and health effects of lupus.

Drives Undertaken on World Lupus Day

World Lupus Day is sponsored by the World Lupus Federation (a coalition of lupus patient organizations) to promote the quality of life for people affected by lupus by coordinated efforts of its global members.

Several other setups like The Lupus Foundation of America, LupusConnect (online lupus community), Lupus.org are playing a crucial role in uniting lupus groups across the world and spearheading global lupus support to the patients for better treatment development, care, and access.

Purple is the official color of Lupus, so people across the world wear purple or a purple ribbon to serve to end the suffering caused by this disabling and conceivably fatal autoimmune disease via various activities like

• Tagging on social media #worldlupusday
• Posters and campaigns in public areas
• Host a Lunch4Lupus or baking cakes, cupcakes, tarts, and savory pies that may look like butterflies to share online.
• Help raise funds for lupus by hosting a virtual quiz, video telecommunications, a walkathon for World Lupus Day!

Diagnosis and Management of Lupus

• The diagnosis of lupus can be defying as there's no single test to confirm the disease. The symptoms of the patients along with detailed medical history, family history, and lab tests assist the lupus diagnosis
• Since there's no cure for lupus currently, management of the disease focuses on reducing the burden of symptoms
• Known and avoid your common triggers of the disease that might set off the illness or bring on a flare
• common triggers may include ultraviolet rays from the sun, sulfa drugs, sun-sensitizing tetracycline drugs, penicillin or other antibiotic drugs, alfalfa tablets, infections like a cold or a viral illness, any injuries, emotional stress, and exhaustion
• There is no special diet for lupus. However consuming a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains and moderate amounts of meats, poultry, and fish serves the need
• Patients must consult a specialist doctor – rheumatologist for their medical management of the disease
• Certain drugs that may help manage the symptoms of lupus include anti-inflammatory medications like aspirin, acetaminophen, ibuprofen, naproxen, indomethacin, nabumetone, and celecoxib
• Other medications like corticosteroids, antimalarials (hydroxychloroquine), immunosuppressives (immune modulators – voclosporin, cyclophosphamide, methotrexate), anticoagulants, monoclonal antibodies (mAbs), repository corticotropin injection (H.P. acthargel) also help

Hence, let's raise our voices together to fight against the common misunderstandings of lupus and help provide a better world for the patients suffering from the disease through effective management.

References:

1. World Lupus Day - (https://worldlupusday.org/)
2. WORLD LUPUS DAY – May 10 - (https://nationaldaycalendar.com/world-lupus-day-may-10/)
3. World Lupus Day (May 10th) - (https://www.lupusuk.org.uk/world-lupus-day-may-10th/)
4. It’s World Lupus Awareness Day - (https://www.lupusresearch.org/world-lupus-awareness-day/)
5. What causes lupus? - (https://www.lupus.org/resources/what-causes-lupus)
6. Lupus - (https://www.daysoftheyear.com/days/world-lupus-day/)
7. World Lupus Day 2021 - (https://www.awarenessdays.com/awareness-days-calendar/world-lupus-day-2021/)

Source-Medindia