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


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.

Aims of World Lupus Day

World Lupus Day
aims to highlight the following aspects:

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  • 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.

‘World Lupus Day is celebrated on 10th May every year with the aim of generating awareness, developing better diagnostics and treatments and finding a cure for the disease.’
Read More..


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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