Make-up artist: MARIANNA GENTI – IFIGENIA BATOUDAKI Hair styling: GEORGIOS DOUDESSIS, Custody gearing: VASIA AGELIDOU, Music clip: APHRODITE, Photos: PANAGIOTIS MALLIARIS, Art direction: MICHAEL KONSTANTINIDIS
List of participants alphabetically: MIRTO AVGERINOU, ILIAS BOGDANOS, MICHAEL KONSTANTINIDIS, MARIA PAPADOPOULOU
Special thanks to the president of Hellenic League Against Rheumatism (EL.E.AN.A.) Mrs. ATHANASIA PAPPA, Mrs. NIKOLETTA KOUSOURI and AGGELIKI AIVATOGLOU (Mental Health Professionals), rheumatologist Mr. SPYROS Ν. ΝIKAS (Trained in Musculoskeletal U/S at Russells Hall Hospital, UK), Mrs. KATY ANTONOPOULOU (Managing Director / Alpha Public Relations), Mr. GREGORY ASTERIADIS (Graphic Designer / Axion Design), Mr. STAVROS and CHARIS KOUTSOKOSTAS (Cinephoto.gr), Mr. THODOROS TSIROS (Holistic Treatments & Training / Holitouch) and Mrs. VOULA KAZOPOULOU.
LUPUS GR 2020
Hellenic League Against Rheumatism People (ELEANA) with the contribution of people of the arts created and coordinates a special project for Lupus hoping that it will contribute to relieving the disease from the stigma it bears since the rigid problem of prejudice and stigmatization against mental and physical illness remains unchanged.
The campaign «LUPUS GR 2020» is the starting act of an integrated artistic/social project whose goal is to inform and raise awareness about prevention, early diagnosis, treatment and rehabilitation of arthritis/lupus patients. Therefore, the creation of such a campaign enables organizations dealing with Lupus and health care providers around the world to re-contribute to the information and awareness campaign by assisting with
research into pathophysiology. Currently, doesn’t exist a global campaign about lupus supported by all organizations as some of them have different agendas, philosophies, and even different awareness months, resulting in confusion. However, the power of art is so appealing that if organizations associated with lupus choose to embrace it, they can make a difference by highlighting a global health problem.
Public Relations Campaign about Systemic Lupus Erythematosus (SLE) in Greece and abroad; Flyers and electronic mass media, Social media (Instagram – Twitter – Facebook), Site of ELEANA, YouΤube & TV. Presentation of the campaign to EULAR, EULAR PARE, EURORDIS, LUPUS EUROPE, AGORA, PLATFORM, PAIN ALLIANCE EUROPE, etc.
Public Relations Campaign about Systemic Lupus Erythematosus (SLE) in Greece and abroad; Flyers and electronic mass media, Social media (Instagram – Twitter – Facebook), Site of ELEANA, YouΤube & TV. Also, relevant associations from Greece and Europe: EULAR (European League Against), PARE ((People with Arthritis and Rheumatism), AGORA PLATFORM, UNITED NATIONS COMMITTEE ON INFORMATION AND TRAINING, PAIN ALLIANCE EUROPE, LUPUS EUROPE (a European organization offering information about lupus at European level) EURORDIS
Special event: Presentation of the campaign «LUPUS GR 2020» by scientific personnel from the Hellenic League Against Rheumatism (ELEANA).
People of the arts take part in this special project, with the aim to raise awareness and inform the public about Lupus. We hope that this private initiative in co-operation with the Hellenic League Against Rheumatism (ELEANA) will contribute to relieving the disease from the stigma it bears since the rigid problem of prejudice and stigmatization against mental and physical illness remains unchanged.
In an age full of difficulties and ill-health and with the stigma of mental illness being a mark of shame effectively undermining the mentally ill in a society still dominated by stereotypical perceptions, prejudices and discrimination, artists and other people respond selflessly to the call of this particular venture in order to communicate the existence of lupus worldwide. And so, with their support, the campaign «LUPUS GR 2020» is the starting act of an integrated artistic/social project whose goal is to inform and raise awareness about prevention, early diagnosis, treatment and rehabilitation of arthritis patients. Therefore, the creation of such a campaign enables organizations dealing with Lupus and health care providers around the world to re-contribute to the information and awareness campaign by assisting with research into pathophysiology. Currently, there doesn’t exist a global campaign about lupus supported by all organizations as some of them have different agendas, philosophies, and even different awareness months, resulting in confusion. However, the power of art is so appealing that if organizations associated with lupus choose to embrace it, they can make a difference by highlighting a global health problem.
“While taking a break from preparing a new project, I thought about launching an information and awareness campaign about lupus. The idea came to me because my mother has been battling with it for the last fifteen years. As a fighter and a survivor, the time has come for her to see the completion of this campaign whose purpose is to inform about the signs and symptoms of the disease since early diagnosis and treatment are crucial to prevent its long-term consequences. I would like to thank the artists, the president of the Hellenic Anti-Rheumatic Stroke Society (ELEA) Ms Athanasia Pappas, Ms Nikoleta Kousouris & Angeliki Aivatoglou (Mental Health Professionals), the rheumatologist Mr. Nepthea Spy. U / S Musculoskeletal at Russells Hall Hospital, UK, Ms Kaiti Antonopoulou (Managing Director / Alpha Public Relations), Mr Grigoris Asteriadis (Graphic Designer / Axion design), Mr Stavros & Haris Koutsokostas (cinephoto.gr), Mr Theodoros Ciros (Holistic Treatments & Training / Holitouch) and Mrs Voula Kazopoulou who participated voluntarily and without personal profit, in the planning and the completion of the «LUPUS GR 2020» campaign.”
- Michael Konstantinidis (DISTINCTIVE GR)
The first diagnosis of LUPUS disease dates back to the Middle Ages when the name LUPUS (which means wolf in Latin) also came to be because the skin lesions caused by the disease resemble wolf bites. There are two basic forms of lupus, the Cutaneous Lupus which mainly causes skin rushes and the Systemic Lupus Erythematosus which can affect the skin but also, the joints and internal organs (kidneys, heart etc.). Next comes Drug-induced lupus which is caused by taking certain types of drugs and the Neonatal Lupus that affects newborns whose mother’s suffer from lupus disease or some other autoimmune disease.
What is Systemic Lupus Erythematosus (SLE)
The Systemic Lupus Erythematosus or SLE is a very “mysterious” disease; while on one hand, it creates obstacles for patients and doctors alike since its cause is still unknown, on the other hand, it ignites awe and interest precisely because of its strange nature.
S.E.L. is a chronic multisystemic, inflammatory disease of late adolescence which belongs to the family of rheumatic diseases and can cause great changes in the lives of patients and their families. The systematic disease is that in which many different parts of the body can be affected, while the term inflammatory refers to the reaction of the body, which results in focal damage to the affected organ (this is only for joints).
Generally, it throws the autoimmune out of balance causing it to produce antibodies which target healthy tissues. Particularly it can affect the joints, as well as the skin, kidneys, neurological system, lungs, heart, hematopoietic organs, causing fatigue, a general feeling of being sick, skin rashes like the “butterfly rash” on the face, hair loss, pleuritis, thrombosis in veins and arteries, inflammation of the brain or kidneys and more. Lupus can take a mild form, but it can also create more serious problems. While every patient is different, almost all of them have fluctuations in disease activity known as flares and remissions. At times, there may be no signs or symptom of lupus (remissions) with some patients having full and long-standing remissions.
Finally, even though there is no cure for lupus, the treatment can prove effective in controlling it. The treatment is mainly aimed at limiting the inflammation and suppressing the abnormal activity of the immune system, usually with the prescription of specific medication that is needed. Of course, due to the changing nature of LUPUS, the type and amount of medication can change. That is why regulating the symptoms is important for us to control the disease and ensure a long-term and productive life for the patient.
The impact of Lupus
The Lupus Foundation of America estimates that at least five million people internationally are afflicted by lupus, with the majority being Black, Asian, North American and/or Indian. The disease occurs mainly in women aged 15-45, a percentage ranging from 70% to 90% in comparison with men and children who
can be afflicted more rarely but with more serious complications that can progress rapidly. Figures from the National Patient Register of Λυκείου του CDC show that the impact of the disease mainly on young black and Hispanic women of Latin America cannot be ignored, because it is two to three times more prevalent in them and most of them develop lupus in a younger age, experiencing very serious complications with high death-rates. In Europe, more than 500.000 people suffer from lupus and six out of ten (61,1%) claim that the disease has a great toll on their mental and emotional health, according to data from global online research contacted on approximately 5.000 SLE patients from 96 countries. The research was announced by the World Lupus Federation (WLF) on the World Awareness Day for Systemic Lupus Erythematosus and about one-third of the subjects mentioned that the disease has had some impact on their emotional state. This particular study revealed that the psychological impact of SEL can be as devastating as the physical complications of the disease, that 8 out of 10 patients are interested in participating in support groups to improve their mental and emotional health and that, finally, almost 7 out of 10 respondents believe that their physician has a moderate to good understanding (38.3% and 31.4% respectively) of the emotional impact that SEL has on their psychological health.
“Actions to raise awareness and inform the public on the subject are still very limited, contributing to the various misconceptions that have formed about the disease. According to another online survey contacted in 2016, 51% of respondents couldn’t identify the physical complications associated with lupus and more than 1/3 didn’t even know that lupus is a disease”
- – points Ms Athanasia Pappa, President of the Hellenic League Against Rheumatism (ELEANA), who is also an official member of the LUPUS EUROPE.
“People with SEL will have to endure a life with the unpredictable and changing consequences of this incurable disease. Often, they experience social isolation due to the debilitating effects of the disease on the body but also from public misunderstandings about SLE. disease».
- said Julian Lennon, photographer, writer, musician, philanthropist and global ambassador to the Lupus Foundation of America, and Secretary of the WLF.
Also, three out of four people expressed their interest to learn about new opportunities to participate in clinical trials for potential new treatments. However, 80% said that they had never been asked by their doctor if they would be interested in participating in such projects. The research findings reinforce patient-centred ‘calls to action’ included in a new online report, with the title ‘A vision for Lupus’, published by GSK at visionforlupus.org. ahead of World Lupus Day.
Representatives of WLF in collaboration with the Global Multidisciplinary Steering Committee, produced this report, that highlights gaps and inconsistencies in the care provided to Lupus patients and suggests areas of action to address them. Research data show that there is great interest in new clinical trials and that actions to educate physicians and their patients with Lupus are acceptable and productive.
ELEANA and GSK, collaborate in order to inform anyone who is interested in their findings and decide on the appropriate line of action to improve quality of care for lupus patients.
ABOUT THE SURVEY
The online survey consisted of 12 questions, it was translated in 9 languages: English, French, German, Italian, Portuguese and Spanish and it became available online, on the site of the WLF between the 15th and 29th of April. The survey was also promoted through social networks managed by the Federation and its members. 5037 submissions were made, a number which represents participants from 96 countries. Out of them, 4710 were from people who have lupus and 4559 were of these, 4,559 were sufficiently completed to be included in the final data analysis. In Greece, the research was promoted by ELEANA.
“Medical research efforts for SEL and the discovery and development of safer and more effective treatments for SEL patients are underfunded compared to other diseases of similar severity. By increasing awareness about the difficulties these patients have to face daily, we are trying to convince the involved parties to increase funding for research facilities, education and support, to improve their quality of life”.
- said Steve Gibson, Managing Director of the Lupus Foundation of America and Secretary of the WLF.
Although about 40 different treatments are in various stages of clinical development and testing, the medical community still lacks the level of education and awareness needed to correctly identify and diagnose the symptoms of people suffering from lupus. However, they can provide patients with the latest information about the disease and refer them to specialists to help them with medication currently available and that is why adequate information about the disease is important.
ABOUT THE WORLD LUPUS FEDERATION (WLF)
The World Lupus Federation (WLF) is a coalition of lupus patient organizations united to improve the quality of life for all people affected by lupus. Through coordinated efforts among its affiliates, the Federation works to expand global initiatives that create greater awareness and understanding of lupus, provide education and services to people living with the disease and advocate on their behalf.
ABOUT THE WORLD AWARENESS DAY FOR SYSTEMATIC LUPUS ERYTHROMATOSUS
The 10th of May has been declared the International Day against Lupus. and the WLO is coordinating its annual celebration. The main aim is to bring attention to the disease and the impact it has on millions of people worldwide. The events taking place in the context of the World Awareness Day consist of educational seminars, reports on health issues and events for the media aiming to raise awareness and stimulating public and government action.
ABOUT THE HELLENIC LEAGUE AGAINST RHEUMATISM (EL.AN.A.)
The Hellenic League Against Rheumatism is a charity, “non-profit” association recognized by the state. It was founded in 1978 in Athens and has more than 1.500 members, who are mainly people with rheumatic autoimmune diseases, people interested in supporting them and rheumatologists
and physicians interested in rheumatic diseases. All employees work voluntarily. Members of the Scientific Committee are professors of Rheumatology in almost all Universities of Greece as well as teachers and physicians of other specialities related to rheumatoid arthritis.
ELEANA has 8 branches in major cities in Greece and maintains strategic cooperation with the IASIS & THALEIA clubs. Furthermore, as an organization of social focus, represents Greece in the European organization EULAR (European League Against Rheumatism), PARE (National organizations of people with arthritis/rheumatism). ELEANA is a founding member of Sjogren Europe, the AGORA PLATFORM, an exclusive member of the United Nations Information and Training Committee, the PAIN ALLIANCE EUROPE, the LUPUS EUROPE (organization providing information about lupus at European level) and the EURORDIS, while it is also included in the European Transparency Register.
The aims of ELEANA:
(1) Informing the Greek population about the severity and dimensions of arthritis – rheumatism. The dimensions of inflammatory diseases of the joints cover all areas of life (personal, social, financial and occupational).
(2) Providing appropriate support to rheumatoid arthritis patients to improve their quality of life and reduce the negative effects of rheumatic disease on daily life, work and leisure.
(3) The organization of the fight against rheumatism, in collaboration with state health authorities and members of Greek society, promoting every measure that contributes to information, prevention, early diagnosis, treatment and rehabilitation of rheumatoid arthritis.
(1) The research of the social dimension of arthritis – rheumatism, the effect of thermal springs on rheumatoid arthritis in our country.
(2) Organizing a pan-European conference of rheumatoid arthritis with emphasis on the action of spa treatments and the development of medical tourism.
- c. Promoting health issues for the musculoskeletal system in NHS
(1) Information on the self-assessment of inflammatory arthritis symptoms and treatment of pain. Information on when to see a rheumatologist.
(2) Access to referral centres for specific surgeries (eg Cervical spine surgery in rheumatoid arthritis).
The activity of ELEANA currently focuses on the following areas:
- Information on rheumatic diseases
- Publishing and distributing leaflets and small books on medicines and diseases respectively, which answer questions frequently asked by people with rheumatic diseases.
- Holding lectures and seminars to inform on topics of direct interest to those suffering from Arthritis / Rheumatism.
All the above services are offered free of charge to all interested parties.
- Representing responsible state agencies for resolving rheumatic diseaseseg.participation of rheumatic patients in public competitions, participation in exams for higher education in a special category of children with rheumatic diseases.
- Organization of excursions.
- Organizing social events.
- Participation in the annual conference organized by the European League Against Rheumatism(EULAR).
- Annual participation in the activities of the European Arthritis / Rheumatism Association (PARE) organized to celebrate World Arthritis / Rheumatism Day (12 October). Hellenic Anti-Rheumatic Society represents Greece as a social organization in the European organization EULAR PARE (non-profit, non-governmental): – European Society Against Rheumatism / Arthritis / Rheumatism in Europe – (European League Against Rheumatism / People with Arthritis / Rheumatism in Europe), in which the Board of Directors is a member of EL.E.AN.A.
- Psychological Support
- Psychological Support Phone Line Operation (210 8237302).
The line is nationwide and receives requests daily (Monday to Friday 10 am – 8 pm) that are answered directly or by appointment by specially trained psychologists.
Psychological Helpline is aimed at our fellow sufferers
of musculoskeletal disorders and their families, friends or caregivers. It provides an alternative way of services that is immediate, free of charge and accessible to people having mobility issues, lack of time or living remote places but also to those who find it difficult to meet face to face with a mental health professional.
It is noteworthy that the continuous upward trend of the telephone line has also had a positive effect on the other actions included in the Psychosocial Support Program of EL.E.AN.A.
- Coordination of psychological support groups, with the aim of getting members to become familiar with the existence of the rheumatic disease, to communicate and share the most difficult emotions they may experience.
- Individual psychological support sessions.
- Education & Self-Management Program, which aims to inform and support members, with the contribution of invited rapporteurs, who develop topics such as medicines, the relationship with the practitioner, exercise, nutrition, physiotherapy, etc.
The Mental Health Professionals Supporting the Psychosocial Sector of ELEANA are Ms Nicoletta Kousouris, a psychologist-group psychotherapist and Ms Aivatoglou Angeliki, a sociologist-group psychotherapist.
The contact information of the Hellenic Anti-Trauma Society (ELE.AN.A.) is:
51 STADIUM (NEAR OMONIA METRO), 1ST FLOOR OFFICE 12-13-14-15
www.arthritis.org.gr / LINKED IN / INSTAGRAM / FACEBOOK / YOUTUBE
HELP LINE:+30 210 8237302
Monday – Friday 10.00 – 16.00
One of the most successful American singers in the world Tony Braxton has won 7 Grammy Awards, 7 American Music Awards, 9 Billboard and sales of more than 50 million copies worldwide is suffering from Systemic Lupus Erythematosus. When the artist discovered that she was suffering from lupus, she reported her health problem and then began to help those who were suffering by setting an example. Despite her serious health problems, she continues to be active in the music industry.
Singer Selena Gómez revealed to Billboard Magazine that she was diagnosed with lupus and had to undergo a course of chemotherapy. «I was diagnosed with lupus and had to undergo chemotherapy. That’s why I stopped everything; I could have had a stroke. » However, the young pop star continues her professional career looking at the future with optimism.
Singer Seal has reported his health problem, revealing that his scarred face is due to Systemic Lupus Erythematosus. The famous artist continues to move audiences around the world with his sensual voice.
ALONG WITH A WOLF
“Why do I have to do all these exams? What exactly is happening to me? These were my first questions because for a long time there were various symptoms that bothered me like joint pain, muscle aches and extreme fatigue. I admit that the diagnosis of the disease did not come easily, and when a rheumatologist discovered that I was suffering from an autoimmune disorder called Systemic Lupus Erythematosus, I was startled. You know, unfortunately, for some people lupus has a mild image and the most frightening a
spect seems to be its name alone, while for others it is really serious since it endangers their lives and these disagreements can create enormous confusion around the disease.
So, a crooked wolf came in my life to swallow me up and my initial reaction was defensive as I didn’t know much about him. But in the years that followed and after seeing my daily routine change, I decided to confront him with the help of experts by trying to focus my attention on the positive things in life and not on the negative, so as not to succumb to self-pity, while also searching for solutions that would help me I take better care of my body and my soul in order to have a decent life without burdening my loved ones.
The truth is that today I am coming to terms with this Wolf by having a dialogue with him as he is the only one who knows in detail the pain that it causes me. The most important for a broad-spectrum disease, such as this one, is to get informed and then educate those who make up a patient’s environment so that they can understand the problems it creates. Unfortunately, it is not always easy for the caretakers to manage one’s life since the lack of patience along with deceitful appearances of patients often creates doubts and tensions. I believe that information campaigns are necessary so that those who are ill do not put their lives at risk and other scientists and researchers can find the needed funds to seek treatments, but they are also important for dissolving any misconceptions among the public. Lupus is not infectious, contagious or carcinogenic and this has to be highlighted and known. I agree that there
are many lupus-related campaigns abroad, but none is as relevant to Art as this is.”
“On my thirtieth birthday, I was assured that I was suffering from a recurrent and currently incurable inflammatory disease called Systemic Lupus Erythematosus. At the birthday party that followed, I decided not to share it with anyone, and the reason was that I was confused. In fact, in the past, I had some symptoms such as fever, body ache, swelling of the joints, hair loss, shortness of breath and skin rashes such as the «Butterfly rash» that appears on the cheeks and nose, but without any diagnosis as the results from the tests I did came out as negative. A recent survey showed that the majority of people who were ill were not properly diagnosed and more than half had visited four or more different healthcare providers to make a proper diagnosis. For people like me, Lupus brought great changes, because up until then I had been leading a fast-paced life, a fact the disease changed as it brought new daily challenges, medical complications or side effects from hard drugs and I had to adapt to a new reality.”
“I was born in 1975 in Thessaloniki where I grew up. When I finished school, I got a job right away and I was completely satisfied with the way my life was going … but in fact, life is full of ups and downs, and I say this because all of a sudden, my health was compromised; I faced various health problems, symptoms would appear in various parts of my body and, since they would constantly alternate,
any visit to the doctors was in vain. Time passed with negative consequences for my mental and emotional stability. The truth is, I started to feel very frustrated and anxious, but nevertheless I continued to take exams in order to get an answer to this mystery. However, Andreas came into my life and as I got emotional and started to plan our common life, a sudden numbness in my whole body was the reason that led me to the hospital. During my hospitalization, the pain I felt
was so intense that I felt like someone was tearing my muscles. In that hospital, Andreas knew a doctor who referred us to his brother, a rheumatologist specializing in rheumatic diseases. I did not understand why I should visit a rheumatologist, but my partner’s persistence was the one that finally convinced me and with my discharge, we booked an appointment and the next day we went to his office where I started to tell him the facts. To my surprise, the doctor made a first diagnosis which was later confirmed. I was speechless when he announced that I was suffering from a connective tissue disease, now
known as autoimmune disease, called Systemic Lupus Erythematosus. The name of the disease alone scared me, but the doctor reassured me by saying that although there is no cure, following his advice I can have a good quality of life. After studying up a little on the disease, I learned that those infected with lupus have some kind of immune damage, and as a result, their bodies do not easily distinguish foreign invaders. Thus, the immune system constantly produces antibodies against healthy tissues, virtually rejecting itself from the body.
The nature of the disease is such that the symptoms vary and often differ from person to person, requiring doctors of various specialities (nephrologist, haematologist, pulmonologist, etc.) to face it. The treatment is individualized for each patient’s needs depending on the organ that is affected and it includes medication, rest when the disease is in flux and caution with sunlight exposure. According to my doctor, a new intravenous drug for once–a-month injections has recently been approved in Europe and America and seems to help significantly and safely several patients. Also, some new drugs are expected to be released in the coming years. So, let’s all help as much as we can in spreading this lupus campaign.”