World Lupus Day: “Let’s Join Together to Fight Lupus”

World Lupus Day: “Let’s Join Together to Fight Lupus”

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Highlights:
  • World Lupus Day is celebrated on 10th May every year
  • Its major objective is to create greater awareness and understanding of the disease
  • It encourages research for developing new diagnostic tools and treatments and eventually finding a cure
World Lupus Day is being celebrated globally on 10th May every year since 2004. It is sponsored by the World Lupus Federation, which is a coalition of numerous lupus patient organizations around the world, with the common goal of generating greater awareness about the disease and improving the lives of those afflicted.
World Lupus Day: “Let’s Join Together to Fight Lupus”

Lupus is a major global health problem and can affect practically anyone and everyone - people of all ages, genders, nationalities, ethnicities, and races. It can affect any part of the body at any time, often with life-changing consequences. While lupus knows no boundaries, having first-hand knowledge about the disease can help lessen its impact.

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Aims of World Lupus Day

World Lupus Day aims to highlight the following aspects:
  • Improvement of healthcare services catering to the needs of lupus patients
  • Early detection and prompt treatment of lupus cases
  • Generation of reliable epidemiological data on lupus
  • Importance of research in finding a cure for lupus
  • Rectification of public misconceptions about lupus
  • Providing physical and emotional support to persons living with lupus

World Lupus Day 2019 Theme: Let's Join Together to Fight Lupus

The theme for the 16th annual celebration of World Lupus Day on 10th May 2019 is 'Let's Join Together to Fight Lupus.' The celebrations will be supported by the World Lupus Federation, which is an association of over 200 patient organizations across the globe. The World Lupus Federation promotes educational, research, and advocacy activities with the aim to generate greater public awareness of the disease.

How is World Lupus Day Celebrated?

World Lupus Day is celebrated through various activities and events organized all over the world to commemorate the occasion and raise awareness about the disease. Some of these activities are briefly highlighted below:
  • Educational Activities: These activities are crucial for creating awareness, especially among lupus patients about their condition. Pamphlets tailored to their needs can be very helpful. For illiterate patients, verbal communication is the best option for educating them about the disease. Female patients should additionally be given advice regarding marriage, contraception, pregnancy, and breastfeeding. Besides the patients, their families should also be educated so that they are more supportive and receptive to their needs
  • Organization of Rallies: Rallies can be organized to create awareness about lupus. For example, the Lupus Foundation of America, Philadelphia Tri-State Chapter always organizes a World Lupus Day Rally every year
  • Lupus Day Walks: These walks not only commemorate World Lupus Day, but also create awareness about the condition and raise funds for lupus research through sponsorships
  • Lupus Ambassadors: Ambassadors can be instrumental in elevating the status of lupus on the global health agenda. For example, musician and philanthropist Julian Lennon has been the Global Ambassador for the Lupus Foundation of America since 2011
  • Advocacy: The aim of advocacy should be to encourage world leaders to help lupus patients. An important policy document related to advocacy is the "Lupus Knows No Boundaries e-Report", which highlights the experiences of lupus patients and their physical and emotional needs
  • Networking: Setting up a network that includes families of lupus patients, physicians, lupus researchers, and government officials can lead to better outcomes and prospects for lupus patients
  • Twitter Chats: Posting messages on Twitter with the hashtag #WorldLupusDay can stimulate useful conversations and generate awareness about the disease among the global Twitter community
  • Real Life Stories: These provide first-hand experiences from lupus sufferers that can enlighten others and encourage them to do something for people living with lupus
  • Tea Parties: Organizing a tea party at home allows family and friends of lupus patients to get together to collectively celebrate World Lupus Day
  • Go for Anything Purple: The awareness color for lupus is purple. For example, wearing a purple lupus awareness ribbon, wristband, T-shirt, or sweatshirt, or buying lupus themed coffee mug or tea towel can show support for people living with lupus, as well as raise funds for lupus research from the sales

Lupus Day Celebrations around the World

  • World Lupus Day Exhibition in Singapore: Lupus Association of Singapore in association with Tan Tock Seng Hospital, Singapore is organizing a World Lupus Day Exhibition to share their knowledge and experience about the disease with the general public. They will also provide useful information on how lupus is treated and where to seek help
  • World Lupus Day Walk in the UK: The Hibbs Lupus Trust, Cannock, Staffordshire, UK is organizing its Annual World Lupus Day Walk on 10th May 2019
  • Fun Walk in South Africa: A fun walk is organized annually by the Tygerberg Hospital in Cape Town, South Africa, just for the fun of walking. This 5 km Fun Walk on World Lupus Day is aimed at raising awareness about the disease
  • Awareness Programs in Bulgaria: The Bulgarian Organization for Patients with Rheumatic Diseases (BOPRD) organizes awareness programs on World Lupus Day every year. This includes interviews and publications by the media, as well a lighting-up the National Palace of Culture, one of the most famous buildings in Sofia, in purple

Lupus: Facts & Figures

  • 5 million people are affected by lupus worldwide
  • 16,000 new lupus cases are reported annually across the world
  • 90-95 percent of lupus patients experience muscle and/or joint pain
  • On average, it takes 6.4 years to receive a lupus diagnosis in the UK
  • Prevalence of lupus is 3 per 100,000 in India
  • Survival rate from lupus in India is 50-60 percent at 10 years
  • Major clinical features in Indian lupus patients are arthritis (63%), fever (51%), and skin lesions (45%)
  • Lupus is more common in women - 9 out of 10 patients are female
  • Lupus can damage any organ or tissue in the body, including the heart, kidneys, skin, and joints
  • Lupus is not contagious and therefore cannot spread from person-to-person

Lupus: Beliefs & Attitudes

A 16-Nation International Survey carried out by the World Lupus Federation has shown that there is a low global understanding of the disease. Some of the key findings regarding beliefs and attitudes about lupus are highlighted below:
  • 51 percent of participants did not know that lupus is a disease
  • Of those who knew that lupus is a disease, 48 percent over 55 years did not know of any complications associated with the disease
  • 57 percent of participants were comfortable in hugging a lupus patient
  • 56 percent of participants were comfortable sitting next to a lupus patient on a bus
  • 49 percent of participants were comfortable in sharing food with a lupus patient
  • 13 percent of participants believed that unprotected sex can spread lupus
  • 11 percent of participants believed that lupus is a type of bacteria
  • 76 percent of participants thought that more awareness is required to highlight the impact of lupus on sufferers
  • 65 percent of participants felt that the best ways to dissipate information about lupus are through online websites, social media, print, and electronic media

Latest Developments in Lupus Research

Over the years, there have been major advancements in our understanding of lupus. However, there is still a need to bridge the gap between treatment and research in order to generate new data for finding a possible cure that will provide solace and hope to lupus patients and their families.

As per the Lupus Foundation of America, there are currently over 40 new drugs in the pipeline, under various stages of development. Many of these drugs are undergoing clinical trials, with around ten already in Phase III. Importantly, more public-private- partnerships (PPP) will expedite these drug development efforts. Some of the fruits of research are briefly highlighted below:
  • Monoclonal Antibodies: The first drug to be developed for lupus in over half a century was a monoclonal antibody (Belimumab), which was marketed by GlaxoSmithKline (GSK) in 2011. Another monoclonal antibody (Rituximab) is very effective against the hematologic form of lupus
  • LFA-REAL Assessment Tool: The Lupus Foundation of America (LFA) has recently developed a tool called LFA-Rapid Evaluation of Activity in Lupus (LFA-REAL) for the assessment of the pathogenesis of lupus and its response to treatment. Importantly, this new tool can assess the progress of new drug molecules undergoing clinical trials, which can significantly accelerate drug development
  • Stem Cell Therapy: The LFA provides funding for stem cell research for the development of novel therapies for lupus. Currently, mesenchymal stem cells (MSCs) are being used for developing these therapies. MSCs are a type of 'adult' stem cells found in mature tissues of the body. Notably, clinical trials using MSCs have shown that 75 percent of the study participants responded well to treatment, which is highly promising
  • Metabolic Inhibitors: Two drugs, both used for regulating metabolism, have shown promising results in lupus patients. One of these is metformin, which is widely used for the treatment of type-2 diabetes mellitus, while the other is termed '2DG', which is still undergoing investigation
 

Health Tips for Lupus Patients

  • Avoidance of Exposure to Sunlight: Since sunlight can aggravate lupus symptoms, it is important to take precautions. Long-sleeved clothes, hats or umbrellas are recommended for going out in the sun. Using a sunscreen lotion having a Sun Protection Factor (SPF) of 25 or above will protect against harmful UV rays present in sunlight
  • Prompt Treatment of Infections: Infections are common in lupus patients, especially if taking steroids or immunosuppressants. Therefore, it is important that patients should get any unexplained fever evaluated and treated promptly
  • Precaution for Contraceptives: Female lupus patients should use contraceptive pills with caution. Pills that contain only progesterone or low-dose estrogen are recommended. A better option is to use barrier methods
So, on World Lupus Day let us join hands to garner support and pool our resources together to fight this disabling and potentially fatal disease, so that lupus patients can lead active and fulfilling lives!

References :
  1. Kumar A. Indian Guidelines on the Management of SLE. J Indian Rheumatol Assoc. 2002; 10: 80-96.  - (http://medind.nic.in/jaa/t02/i4/jaat02i4p80.pdf)
  2. World Lupus Day (May 10th): Let's Join Together to Fight Lupus - LUPUS UK  - (https://www.lupusuk.org.uk/world-lupus-day-may-10th/)
  3. Emotional Support and Clinical Trial Volunteers are the Focus for World Lupus Day 2019 - Lupus Foundation of America - (https://www.lupus.org/news/world-lupus-day-2019)


Source: Medindia

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