Why Do We Celebrate World Lupus Day?

Every year on May 10, people across the globe celebrate World Lupus Day. The initiative came from the World Lupus Federation, a global organization that brings together lupus patients to develop their treatment. In doing so, they aim to improve the perception of what it means to live with the disease.

The general goals of this day focus on increasing the understanding of lupus, its symptoms and existing treatments. At the same time, the goal is to increase awareness of the clinical significance of a condition that in most cases affects people between the ages of 15 and 45.

So if you want to know what lupus is, what its symptoms are, the treatments available, the number of patients affected, the activities of their day, and how to get involved, we invite you to read on!

What is lupus?

Lupus is a chronic autoimmune disease that affects the skin, joints, kidneys, heart, brain, lungs, red blood cells, white blood cells and platelets, among other things.

The types of lupus are systemic erythematous, cutaneous, drug-induced and neonatal. Although the causes of the disease are not clear, experts recognize the following as risk factors:

• Genetic predisposition.
• Excessive exposure to sunlight.
• Epigenetics: Variations in gene expression.
• Some drugs used to control blood pressure.

Symptoms

As we explained, lupus is a disease that can affect different parts of the body; therefore, the symptoms vary from person to person. Similarly, the intensity and duration of the critical episodes may also vary.

Despite this, the symptoms that are usually present are almost always the following:

• Pain in the joints with generalized fatigue.
• Discomfort in the chest.
• Dry eyes.
• Fever.
• Butterfly-shaped rash on the face.
• Anemia.
• Raynaud’s phenomenon: A spasm in the blood vessels in the extremities, especially in the fingers, which causes them to change color and size.
• Hair loss.

Possible treatment

One of the main goals of World Lupus Day is to raise awareness of the medical alternatives available to patients, i.e. the available treatments. First of all, it is necessary to understand that the disorder is not acute, but chronic and lifelong.

Medicine and self-care are the two most important measures. Thus, some of the most commonly used drugs to treat lupus are:

• Non-steroidal anti-inflammatory drugs (NSAIDs).
• Corticosteroids.
• Immunosuppressive agents.
• Malaria medicine.

Recommendations for personal care include reducing exposure to sunlight, physical activity, a balanced diet, avoiding smoking, and paying attention to levels of vitamin D and calcium.

Speak within lupus

According to estimates, 5 million people worldwide suffer from the disease. The probability of premature mortality in all cases of lupus varies from 10% to 15%. In addition, the systemic erythematous form has the highest incidence in the population.

Along with eye-opening numbers, World Lupus Day seeks to increase the visibility of celebrities who are among those who have the disease. In this way, they try to remove the social stigma that threatens patients’ quality of life.

Some of the stars and celebrities who have lupus are Selena Gomez (actress, singer, producer), Toni Braxton (singer, writer and actress) and Nick Cannon (rapper, comedian, actress and film producer).

Celebrate World Lupus Day

The first World Lupus Day took place in 2004. This was agreed at the VII International Congress on Systemic Lupus Erythematosus and Related Diseases, which took place in New York.

Since that emblematic moment, a slogan has been established every year, working on objectives based on awareness, visibility, dissemination of real information about the disease, creating awareness and appealing to each country’s health systems.

For 2021, the motto is “Make lupus visible”. In this sense, the work focuses on disseminating information through social networks and putting an end to misunderstandings that create barriers.

World Lupus Day: Activities

The tools that World Lupus Day uses to achieve the set goals are its activities, which improve over the years. We can name the most important:

• Virtual competitions.
• Walks and all kinds of events to raise money.
• Congresses with the information presented by experts.
• Poster setup.
• Delivery of interactive books for the education of children and young people.
• Campaigns featuring celebrities such as Julian Lennon (son of John Lennon).

Also read: 7 means to control lupus

How can I attend World Lupus Day?

The benefit of remote interaction, preferred by social networks and other media, means that there are several methods to participate in  World Lupus Day. For this purpose, the first major action is to share the official poster for the day.

The following may also be helpful:

• Use butterfly drawings as a sign of support on windows, and share photos online with the hashtag #WorldLupusDay.
• Donate to official organizations in the country where you live.
• Bake butterfly-shaped cakes, and post photos on social networks. The hashtag to use is #BakeUsHappy.
• Take the lupus quiz with friends to raise money.
• Wear purple clothing throughout May 10, as it is the color that is associated with the disorder.

Education and support to celebrate World Lupus Day

One of the biggest problems in improving the quality of life for lupus sufferers is the delay in diagnosis. The difficulty in detecting the disease is due to the various symptoms. Therefore, educating people makes the difficult discovery faster.

Overall, during World Lupus Day, the psychological and emotional factors in patients should not be overlooked to enhance their experience. Depression and anxiety are common disorders that can be prevented with proper support.