The 23rd LUPUS EUROPE Annual Convention was held in Cyprus, Hilton Park, Nicosia, 14-18 November, 2012. The Cyprus Tourism Organisation was the main sponsor for the Cyprus League Against Rheumatism hosting the LUPUS EUROPE Annual Convention 2012. The web site www.visitcyprus.com welcomes all guests and gives a wonderful presentation of the lovely country.
We are glad to announce another milestone in LUPUS EUROPE’s history:
On the occasion of the 23rd Annual Convention in Cyprus, the Council accepted the
Estonian Youth Rheumatism Association and the Greek Lupus Association EL.E.AN.A
as new members.
Congratulations and a warm welcome in our European lupus community.
Thus, LUPUS EUROPE is the umbrella organization of currently a total of 25 national lupus self-help organizations from 23 member countries throughout Europe.
Chair Yvonne Norton (UK) stepping down,
Treasurer Peter Norton (UK),
Convention manager Fatima Lavoll (N)
Secretary Marja Kruithof (NL)
not running for re-election, a new board had to be elected at the Annual Convention 2012 in Nicosia.
We welcome Augusta Canzona (I) as Vice-Chair,
Alain Cornet (B) as Treasurer
Anne Charlet (F) as Secretary
to the Board of Trustees.
Kirsten Lerstrøm (DK), formerly Vice-Chair, was elected Chair.
Blanca Rubio (E) remains Membership manager,
Simone Müller-Pretis co-opted advisor website.
Wishing good luck to the new and "old" trustees for the years to come,
we may thank Yvonne, Peter, Fatima and Marja
for all the energy they put into their office for the benefit of LUPUS EUROPE.
Wednesday 14th November
A. Registration of all country delegates.
B. Trustee Meeting before the start of the Convention. Minutes of this meeting have been prepared under separate cover.
C. Welcome cocktail followed by dinner.
Thursday 15th November – Official opening
1. Welcome speech by Mr. Marios Kouloumas, Chair of CYPLAR
Mr. Kouloumas greeted all the delegates and conveyed the Cyprus Team delight of having LUPUS EUROPE 2012 Convention in Cyprus and wished everyone a very pleasant stay and fruitful results.
2. Opening address by Ms. Sotiroula Charalambous, Minister of Labour and Social Insurance
Ms. Charalambous welcomed all the delegates and expressed her pleasure that this Convention was being hosted in Cyprus. She highlighted the importance of such conferences to exchange ideas and introduce new incentives. She congratulated them for LUPUS EUROPE’s success in bringing new developments and emphasized that everyone should be aware that people with lupus should enjoy their rights and events like this are needed for the improvement of the people with disability. People with disabilities have abilities that can be strengthened through professional training, protection of favourable conditions at work, provision of technological equipment and continued advancement. It is true that an important progress has been made but, no doubt, a lot more needs to be done for the constant improvement for the quality of life from all European countries.
Finally, she congratulated the Organizers for their excellent organization and its active role and contribution and assured all that she will be at their side in the joint improvement of quality of life.
3. Address by Dr. Myrto Azina, Representative of the Minister of Health
Ms. Azina expressed her great pleasure to address this event and raised the fact that lupus is considered to be a rare disease and that we should all work together in order to increase awareness and, of course, the need to improve quality of life. We, as decision makers, should commit ourselves to give the support required in order to have a comfortable life. As a member of the European Union Committee of Chronic diseases, we cooperate with specialized bodies of all member States in the field of research and public health action of rare diseases. Holland, Denmark and Cyprus held a comparatory meeting of joint action of chronic diseases the previous week.
Ms. Azina finally emphasized that "non governmental organizations play a vital role in the progress of our efforts and can help us reach our target to accomplish our goal". She praised the Cyprus League against Rheumatism for being a sustainable and viable partner.
She expressed her tribute for having the LUPUS EUROPE Convention in Cyprus and wished everyone fruitful discussions.
4. Address by Mr. Marios Mavrides, a member of the Health Committee of the House of Parliament
Mr. Mavrides expressed the commitment of the Parliament to be by the side of people who suffer from lupus. 1 in 2000 people in Cyprus are affected by this disease and the Health Committee of the Parliament will continue to ensure a better life and better quality in their lives. Keeping in mind the hard realities of this disease, it is the duty of the State to try and solve these problems and enhance the attempts made by the Medical profession.
In closing, he wished all a very successful conference.
5. Address by Ms. Emanouella Lambrianides, Head of the secretariat of the Cyprus Presidency of the Council of E.U.
Ms. Lambrianides offered her warm welcome to all who had travelled to Cyprus for this event. The Cyprus Presidency has been aiming towards a better Europe. During the six months of Cyprus European Presidency, emphasis has been given for the prevention of this disease, early diagnosis and health promotion programme not only from Doctors and Researchers but from the Society as a whole. The life style of people suffering from this disease is another issue that has been undertaken by the Cyprus Presidency and a conference is taking place in December of this year to this effect. EU is about the people, for the people and better environment for all to enjoy a better quality of life.
6. Address by Ms. Yvonne Norton MBE, Chair of LUPUS EUROPE
"As Chair of LUPUS EUROPE for the past 4 years, I visited various countries all with their own specialities and interests. The main reason of this event is to conduct the business affairs of LUPUS EUROPE, to elect a new Board of Trustees to continue the work undertaken during the past four years and to increase knowledge of lupus throughout Europe.
Over the next 2 days we will hear from medical experts in Cyprus of research and treatment of this disease and we look forward to receiving this information to take back to our respective Lupus Organizations.
You all know, I am sure, how devastating this disease can be and the detrimental effect it can have on the lives of those that live with it on a daily basis.
How life changes when someone develops lupus, people all around them are affected and their lives are disrupted. Many patients do not live the lives they intended to live. Hence, occasions such as these, are so important to people with lupus.
Thank you for making the delegates of LUPUS EUROPE so welcome in Cyprus."
7. Address by Ms. Foula Markides, member of LUPUS CYPRUS, ex Chair of CYPLAR
Ms. Markides expressed her warm welcome to all delegates from 14 European Countries and to distinguished members of the Cyprus Government. A special welcome to the Chair of LUPUS EUROPE, Ms. Yvonne Norton. Today, is a special day for LUPUS CYPRUS and we are privileged to host this important event for the first time in Cyprus and to have the opportunity to ensure each and every person with lupus develops a positive approach and can lead a productive life.
The Convention has a very interesting programme and we are honoured to host the 23rd LUPUS EUROPE Annual Convention which is under the auspices of the Ministry of Social Insurance. We are all here to discuss, learn and exchange ideas about "Life Against Lupus".
Ms. Markides wished all a pleasant stay in Cyprus, the Island of Aphrodite.
The first session closed with live entertainment of Cypriot and Greek songs The enthusiasm, warmth and positive aura in the room, saw delegates dancing to the rhythm of the music.
1. Presentation by Dr. Alkis Pierides, Internal Medicine Nephrology, Ex Director of Nephrology, Nicosia General Hospital, Ex Consultant Nephrologist and Associate Professor of Medicine, MAYO Clinic, Rochester, MN USA.
Presentation on: Lupus Nephritis Diagnosis, Treatment and Pregnancy. Experience 1980-2012.
Dr. Pierides’ curriculum vitae was read out by Ms. Foula Markidou.
Dr. Pierides expressed his gratitude for the invitation to talk to us about the subject of nephritis, pregnancy and lupus. Lupus is a disease which belongs to a large group of auto immune diseases (about 100 such diseases) affecting human beings and nobody quite understands how it all starts but somehow our own defence mechanism is at fault. It does not recognize our own organs as our own and builds antibodies against them. This can lead to various antibodies circulating the body against various tissues and proteins that destroy our own cells. The spectrum of lupus is enormous. There are many lupus patients who lead a very normal life. In the case of young people with lupus who have kidney involvement, this can change their lives completely and also there are patients that will have either CNS involvement or lung involvement and these are 2 very serious complications of lupus. Whenever the brain is involved, then lupus becomes a very dangerous disease and the same thing happens with lung disease too.
Concentrating on kidneys: Kidney problems are common in young ladies. At least 50% or 60% of girls at the age of 14/15/16 years old, presenting with lupus or rheumatic pain, will develop kidney involvement making their lives more difficult. Kidney biopsy is very important. Experience plays a very important role. Whenever you have acute nephritis, then you need to move very fast as things can deteriorate very quickly.
Lupus presents in retrospect by not feeling well and this symptom sometimes gets neglected and then you get morning stiffness, painful fingers, and then mild fevers. Laboratory tests need to be carried out. If you see oedema or swelling of the ankles then there may be something wrong with the kidneys. Real failure of kidneys must be avoided. Presently, almost no one has kidney failure.
In the 60’s and 70’s lupus had a very bad reputation. In England, for many years, the only treatment used was steroids and that had terrible effects. The NHS is credited with the introduction of Cyclophosphamide. Treatment has to start early. Organise biopsy for patients and treat them on IV Cyclophosphamide and oral MMF.
Many girls with lupus will have children and doctors can treat lupus girls and put them into remission. Here is GOLDEN ADVICE: most girls with lupus CAN have babies. These girls are very precious and must seek doctors’ advice very quickly.
Dr. Pierides wished everyone a pleasant stay.
2. Presentation by Ms. Nadezda Stefanova “Yoga in our Life”
Ms. Stefanova stated the positive effects of Yoga in our life and how physical techniques can have a tremendous healing impact on our bodies. She also emphasized how meditation can relax the mind so that we can have a better harmony in both our bodies and mind.
Ms. Stefanova showed some breathing exercises and how these can help us to get rid of all negative feelings. All people present took part in a demonstration of physical exercises that could help us tackle our challenges in our daily lives.
1. Presentation by Dr. Vassos Scoutellas, Rheumatologist at Nicosia General Hospital
Dr. Scoutella’s curriculum vitae was read out.
Lupus can be related to genetic influence and environmental factors. For example, in a twin situation – from 2 eggs – we have 2-9% to both have lupus whilst in monozygotic twins (1 egg) there is much more possibility to have lupus. Also in different ethnic groups it is more common with lupus being severe or less severe. Additionally, in families, if there is more than one person with lupus, then there is more possibility that another member of the family will have lupus or other auto immune disease.
Presently, Biolupus project is under way which is a European project. Patients can volunteer to take part in this project by simply donating blood and this can be done at the patient’s country of origin. This is sponsored by European Science Foundation.
Lupus is a severe disease and can involve several organs, kidney, brain, heart, lungs, blood and could be active from time to time. It is important that the disease is regularly documented. With regard to drugs: lupus patients are taking drugs. Unfortunately, there is no cure for lupus and drugs are life savers. These drugs are divided into 2 categories: chemical or biologics. The only FDA approved drugs are: Aspirin, Hydroxychloroquine and the very recent Belimumab (commonly known as Benlysta). Why are there less approved drugs in lupus?
•Lupus is hard to study
•Lack of clinical trials
The recently circulated drug Belimumab, which took 15-16 years of study, is the first and only biological drug approved by FDA (and EMA) for lupus. The path for drug approval is: first clinical studies on animals and then on humans.
Belimumab for rheumatologists, who highly recommend it, is the choice of the patient. It is a high cost drug. Belimumab can only be given to patients if the disease is active and requires six months to take effect. Belimumab is an appealing drug for everybody and, as written in the text of FDA approval, must only be given if:
•The patient is an adult
•Has active disease
•Has positive auto antibodies
•Is receiving standard care – whatever level this is
Participation in drug research is very important as drugs need to be tested and patients can be involved in the research by taking the drug or by donating blood. Trials have to be started and completed so participation should last until the end – although patients can withdraw at any time. The following are some of the questions that patients should ask:
•Who is doing the trial?
•Is the Company experienced?
•Have they investigator experience?
•How much do they know about the drug?
•Is it approved; is it used; has it already been given to other patients?
And if you do participate, be confident and familiarize yourself with what is happening with the study. Be knowledgeable.
Closing: Belimumab is an approved intravenous drug by FDA and EMA taken every month and any money and funds for research are extremely important.
Dr. Scoutellas thanked all participants for their attention and closed by showing some beautiful sights of our Island that, time permitting, people might like to visit.
2. National Reports
Ms. Norton advised that Finland has changed the name of their Group which is now Lupus Finland. She said we needed to vote, by a show of hands, if this should be agreed. The namechange was unanimously accepted.
There followed the reports of each delegate in the following sequence:
Ms. Kirsi Myllys thanked all for approval of the name change for Finland. She advised that the first Lupus Group started in 1975 and then Lupus patients founded their own society in 2001 in Estonia, however, they were encouraged by the Finnish Rheumatism Association to have their own Society.
There are approximately 2000 lupus patients in Finland. Finnish Lupus Group has 457 members on their list and we have 45 but the number is rising. Last year we published a new guide book and it’s a very enlightening book for new patients. Additionally, the website has been updated.
Ms. Norton advised that Estonia had applied for membership of LUPUS EUROPE. Following the National Report (below), she requested the vote from all the participants by a show of hands. Estonia was unanimously accepted as a member country of LUPUS EUROPE.
Ms Kristi Mustkivi reported that the Estonian Lupus Group (Estonian Youth Rheumatism Association) had celebrated their 10th anniversary in 2011. A two day seminar was attended by 50 people from Estonia and Finland. The Head of the East Tallinn Central Hospital Rheumatology Department has counselled and supported the group for years. The talks covered diagnostics and updates in treatment as well as an overview of the scientific research on the living quality of lupus patients as well as obstacles in everyday life. The Group also participated in a walk by the Estonian Rheumatism Association and shared information about lupus. The seminar was reported on a TV programme and in a health newspaper.
Ms. Norton advised that Greece had applied for membership of LUPUS EUROPE. Following the National Report (below), she requested the vote from all the participants by a show of hands. Greece was unanimously accepted as a member country of LUPUS EUROPE.
Ms. Maria Kasimati representing ELEANA felt honoured to be part of LUPUS EUROPE and to share the common problems of all Groups.
The current situation in Greece is 2,400,000 Greeks with rheumatic diseases. The exact number of SLE patients is still unknown, however, 1,450,000 persons with lupus have been counted in the first 5 years.
The organization was founded in 1979 and the aims are to improve the medical care provided to the patients to make their daily lives a sunshine. The permanent office is donated by the Hellenic Society of Rheumatology. There are only 632 members. One of the main problems is to have people join the association and remain as members. All types of rheumatic diseases are included in the membership. There is a subscription membership of 10 Euros only. Members are from all over the country, however, the majority come from Athens. There are 3 regional branches, Thessaloniki, Patra and Mytilini.
Activities cover all of the country and communication is through emails and telephone. There are 2 salaried staff, one secretary and one psychologist whose salaries come from pharmaceutical grants.
There are 2-3 volunteers working in the Regional Office who are patients themselves. All is achieved purely through voluntary work.
Ms Kasimati closed by thanking Lupus Cyprus for enabling everyone to experience a tremendous knowledge.
Ms. Foula Markidou welcomed all delegates to Cyprus and gave a warm welcome to the new members Estonia and Greece.
Lupus Cyprus, called LU.CY locally, is a member of the Cyprus League Against Rheumatism and consists of patients with lupus disease. This year the focus has been mainly in the organization of the Convention. It was a challenge and it is hoped that everyone will have good memories; for the organisers, it is a special time. Cyprus is a small country and this is the first time Lupus Cyprus had the courage to tackle this challenge.
Ms Ineke Boomker reported that in December there was a special edition of NVLE magazine on children and young people with lupus and other auto immune diseases. In all the magazines which have been published since 2010, there have been international interviews with patients with lupus. Ms. Boomker demonstrated pictures of the people involved in their organization. Dr. Sylvia Kamphuis, who is an expert on lupus in children and young adults, started NVLE Connect.
This year an award has been given to one of the Doctors, the NVLE Award. In September of this year, there was a Lupus Day for kids. A film was also made describing how a lupus patient who was a dancer copes with the disease and this film was nominated for an award.
Ms Cathrine Hjelmeset said the Norwegian Lupus Group has 750 members and 11 regional groups and during the year several patient meetings take place as well as meeting with professionals. There are 5 people on the National Board. The goal is to provide patients with information and increase awareness about Lupus in the Society.
In September 2011 and this year, the Group arranged The World Lupus Day at The National Hospital with interesting speakers both medical and other items. Members also contribute to the ‘Help Line’ for The Norwegian Rheumatism Association. Lupus News is distributed 4 times a year.
Ms Blanca Rubio reported that the Federation was founded in 1996 and has 27 member associations in the Spanish Organization. It was an honour to assist in the Excellence in Rheumatology Congress held in Madrid in January. World Lupus Day was celebrated in May by giving information on psychological, social and health problems of people with lupus and their families. The Federation has been promoting the book “Magic Wand for sale” which helps children with parents who suffer from lupus to understand this disease.
There will be attendance at the European Patients Congress in November of this year. Also continuation of the national toll free phone line to help Spanish lupus patients to obtain information about resources and/or the nearest Lupus association.
Ms Kirsten Lerstrøm said that Lupus Denmark has 1250-1800 diagnosed with SLE and about 200 new patients per year and is the network of patients from five regions. The group issues a newsletter twice a year and arranges 30 plus activities per year for the 300 plus listed members and the much larger web community. People do not pay membership to Lupus Denmark but to the Rheumatic Association.
Last year Lupus Denmark hosted the Convention and made many connections. A grant was received last year for a project which has been launched this year. There was a meeting few weeks ago and the theme was “Lupus and the Brain” with people attending from all over the country which related to the memory loss etc. EULAR 2012 Berlin where some of the most noted specialists presented on the issue that the lupus clinic is only half the picture. EULAR also proved enormously promising as the newly launched project Treat to Target in Lupus would include a patient representative. For next year Lupus Denmark will follow up the Patient Education relaunch project on ‘Lupus Clinic” and on World Lupus Day will focus on the Patient Centre Lupus Clinic.
3. MyLupus – An interactive tool to help patients
Presented by Volker Koscielny, GSK representative, and Ms Elizabeth Hale, Health Research Psychologist.
MyLupus is an interactive tool to help patients achieve focus and manage their disease in a structured way. It aims to guide patients through the process of defining personal goals, identifying the challenges that prevent them from achieving these goals and encourages patients to put specific and realistic plans into action to help achieve these goals.
MyLupus was developed using tried and tested principles of psychological intervention that are currently in use in clinical practice. MyLupus will be available to patients as smart phone application, on the web and as an abbreviated paper version.
By using MyLupus, patients can achieve a greater degree of clarity regarding their most pressing issues. It will enable patients to face their challenges and set a particular goal realistically. It will enable patients to find how to tackle and how to measure/rate their challenges and how they are doing.
The development of MyLupus was driven by insights from GlaxoSmithKline (GSK) supported research and using feedback from a lupus patient-M group advisory board, organized by GSK. MyLupus also aims to be a meaningful tool for patients and will rely on feedback from patients to help shape future updates and developments of this tool.
Friday 16th November
1. Presentation by Ms. Elizabeth Hale, Health Research Psychologist
“What can a psychologist add to Patient Management?”
Ms. Hale presented S.M.A.R.T goals which will assist patients how to effectively influence their lifestyle and disease management.
S = Specific
M = Measurable
A = Attainable
R = Realistic
T = Timely
Therefore, using the above we can make definite plans, review as we go along and also see how confident we are that we can achieve our goals. It gives a good structure and provides patients with a framework to work through and achieve what they want to achieve. Ms. Hale continued with a workshop on this subject with very positive results.
Thanks go to Ms Hale for stepping in at very short notice to give this presentation.
2. Presentation by Prof. Dimitrios T. Boumpas, MD FACP, University of Athens Medical School, and chairman of EULAR Task Force for SLE
“State of the Disease Address”
Prof. Boumpas’ curriculum vitae was read out by a member of the Cyprus team.
Prof. Boumpas expressed his pleasure in the opportunity to be at the Convention and hoped that he will take back with him any feed back from the people/patients present.
He would like to discuss:
a. Where we are now
b. Where we would like to go
c. What we should do to reach our goal
Lupus is an inflammatory disease which involves organs. As time goes by more organs may be added and we start seeing flares, then we see the damage and then we see the infections.
Lupus is a life-long disease and starts early in life. What causes lupus? Studies took place and in the case of identical twins, if one sister has lupus, the rate for her twin sister to develop lupus is 30%. The genes are important but account for only 30%; the rest of 70% account for environment. Therefore, environment is more important than the genes.
What is in the environment that causes lupus? Some of the things we know, UV light, drugs, some think it is diet, but we have no specifics. New developments are trying to understand the environment and this is what we call the microbiota. There is a lot of research now to see whether the hypothesis that lupus has a genetic disposition is proven but it is not enough.
To do well with lupus it is not enough to have a good doctor but a good health system that can support lupus patients and this is the case in European countries. Lupus is also common with other diseases, i.e. Rheumatoid Arthritis, Psoriasis, etc. Lupus has an important feature in contrast with other diseases, and that is it has two faces: Inflammation and thrombosis. These two features of lupus are unique.
Lupus is a costly disease and early diagnosis will avoid future damage and, of course, less cost. Since the financial crisis in Europe, the research will be limited but pressure needs to be put to the governments to continue research.
Lupus patients have twice to five times increase in the risk of death and at NCR there was a publication in Korea that in kids this rises to 20 times. However, it does not apply to most of the lupus patients.
For infections, we need to get vaccinated and we need to sensitize the people so that young girls, before they start their sexual contacts, should be vaccinated and although vaccination is for all girls, it is more important for lupus girls.
Treatment: Prof Boumpas described the various drugs available for the treatment of lupus and the positive effects each one of these drugs have on the patient. Only Aspirin, Hydroxychloroquine and the very recent Belimumab (commonly known as Benlysta) are approved by the FDA. Steroids are still widely used, however, studies are on the way to minimize the use. For vitamin D: lupus patients do not have enough vitamin D and studies show that patients do better when vitamin D is taken. It is important for lupus patients to get the vitamin D supplementation (Dosage: 1-400 units).
It is vitally important for patients to express well their needs to their physician so that drugs can be described that will be good for both patient and doctor. The psychological issue plays a vital role and it is essential that a patient has peace of mind and emotional maturity.
There followed questions and answers.
3. Presentation by Ms. Thalia Avraam SRD on Nutrition Intervention in Patients with Lupus
Ms. Avraam’s curriculum vitae was read out.
Dietary guidance is important to minimize SLE complications; obesity is observed in SLE patients. Life modification is required in order to maintain a body mass index. Mediterranean diet can help (plenty of fruits and vegetables, legumes, fish, olive oil, red wine) and it is highly recommended.
High dosage of fish oil can be very beneficial whilst low dosage of alcohol has been shown to be beneficial particularly to menopausal women. Calcium and Omega 3 are also very important to lupus patients.
Tips: Look for semi skimmed milk, low fat yoghurt, white meat, lean cuts of meat, cook with less fat and cook with olive oil; cut off any visible skin from poultry, drain off fat during cooking and grill instead of frying. Always look for lower fat foods; read labels and keep an eye on the amount of fat.
MOTTO: Eat healthy and smile for a better quality of life!
1. Council Meeting
a. Speech by Ms. Yvonne Norton, Chair LUPUS EUROPE
b. Finance Report
c. Election of candidates for the LUPUS EUROPE Board of Trustees
“Over the past four years, I have worked hard for LUPUS EUROPE. Now, however, I will step aside along with Peter Norton and Fatima Lavoll. We will be voting for the new Board whose future decisions will reflect on patients throughout Europe and when elected, I feel sure, will do a good job.
I truly hope that the new Board of Trustees will consider all actions and not just agree to decisions as a matter of course. Each Trustee must remember that they have a voice and a right to be heard and listened to.
The present Trustees have been involved in many events which are being highlighted at this Convention. Trustee meetings were held in London during February and September and several meetings were held by Skype. Towards the end of last year, Peter and myself were invited to help organize a Patient Programme as part of the Excellence in Rheumatology Conference which took place in Madrid during January.
I am very pleased that four new member countries have joined during my time in office. I am stepping down as Chair earlier than I intended, however, things change and we all have to stop and revalue our lives. My lupus has made it more difficult for me and as I have to spend many hours to carry out my work, this has now proved too much with my other commitments. I thank all of you and your National colleagues for the kindness and thoughtfulness I have received over the years and your words and encouragement are greatly appreciated. I will still be involved in ‘Unmasking Lupus’ and the Smart Phone App and I will be a representative for LUPUS UK.”
Mr. Peter Norton, Treasurer LUPUS EUROPE, presented the Finance Report for the year ending 31st October 2011. Having presented the figures of incoming resources and charitable expenditure along with the balance sheet, he thanked all for the support he had received over the 10 years he had been in office.
Elections for the new Trustees.
Ms. Norton explained that there was only one nomination for each of the vacant positions as follows:
1. Kirsten Lerstrøm Denmark Chair
2. Augusta Canzona Italy Vice-Chair
3. Anne Charlet France Secretary
4. Alain Cornet Belgium Treasurer
All nominees read out their curriculum vitae and expressed their eagerness to offer their services for the cause. The nominated Treasurer was not present, however, his wife who was in attendance, gave the reason why he was unable to attend.
Ms. Norton expressed her reservation and concern to the fact that Mr. Cornet was not present and referred to a similar situation that occurred 4 years ago when a young man who desperately wanted to be part of LUPUS EUROPE was unable to attend the Convention - he had a genuine serious reason – however, and despite the fact that people present in the room knew him, he was not accepted.
Finally, voting took place, voting each nominee separately, and all nominees were accepted.
2. Meetings and Events for LUPUS EUROPE 2012
Presented by Kirsten Lerstrøm, Vice-Chair LUPUS EUROPE
January: Excellence in Rheumatology, Madrid
March: International Alliance of Patients Organizations, IAPO, London Drug Information
Association, DIA, Copenhagen
April: the European Patients Forum, Brussels
June: EULAR, Berlin
August: Treat to Target Lupus, Zurich
September: 1st workshop EUPATI, Frankfurt
November: EULAR Autumn Conference, Zurich
For next year, 2013, there will be the International Congress of SLE in Buenos Aires and the LUPUS EUROPE Convention in France.
3. Tai Chi Chuan Qi Gong in Our Life
presented by Master Vasillious Firippis
Tai Chi is an ancient exercise mostly used for health and relaxation. A soft and gentle way of exercising the entire body, energy, mind and spirit; learning not to be afraid and face life’s challenges.Tai Chi is for all ages and, in China, the Health Authorities prescribe it to patients.
Tai Chi is a series of movements, a set of postures sewn together to create a form. Qi Gong is the health system and body strengthening exercises.
How Tai Chi and Qi Gong may help Lupus:
a. It strengthens the immune system
b. Cleanses the blood
c. Cleanses and strengthens joints and tendons providing more mobility, pain relief and it is calming and relaxing.
Assists in body and mental regeneration, bone marrow washing and promotes healthy stem cell production. To see the results from Tai Chi:
a. Practice daily
b. Attend weekly classes
c. Review lifestyle and diet
d. Change the way you feel about yourself and become responsible of your own life.
A number of attendees took part in a Tai Chi demonstration class which was held at the patio of the hotel.
4. Foot Health and Foot Care
Presented by Ms. Anna Kostrikki
The common foot disorders associated with lupus are:
a. Muscle pain in feet
b. Abnormal walking patterns
c. Toe deformities
d. Nail inflammation
Ms. Kostrikki outlined the problems of feet and nails. The importance of choosing proper footwear and the hygiene required in order to avoid fungal infections. Ensure that the sole, heel and upper linings are of natural materials. Ensure you dry feet well and never walk barefoot. Always ensure that the shoes are the correct size but able to ‘wiggle your feet’. 30% of people with lupus also develop Raynaud’s Syndrome and it is vitally important that both hands and feet are kept warm. Ensure this by wearing thermal socks and gloves.
Saturday 17 November – Final Day
National Reports (cont’d)
Ms Britta Krismer gave a short briefing of the Swiss Confederation: A small country in the middle of Europe consisting of 26 sovereign cantons with a population of approximately 8 million. They have 4 languages, German (mostly spoken), French, Italian and Romansh which is only spoken by 2% of the population.
In 1997 we formed SLEV and for the past 2 years our organization has been run by Mr. Max Hagen and, although not a patient himself, his professional experiences help us to further develop the organization. Our SLEV Organization has 7 regional groups with 4 contact persons all over the country. We have 6 people working in our Association voluntarily and we have approximately 530 members.
We had two medical presentations which took place in hospitals and four times a year we print a patient magazine about the latest news and facts and we print it in both German and French. We also have a website which helps the management team to share the information with our members. Most of our income derives from the membership fee, however, we had a big donation this year from a legacy.
Ms. Simone Muller-Pretis A long term lupus study performed by our association in cooperation with the department of rheumatology of the university at Dusseldorf, was officially finished this year. However, due to the successful data which was highly respected by lupus scientists and the co-operation of the university and a pharmaceutical company, this will now continue.
Another big project we have, is the Lupus Prevention Passport wherein patients are able to evaluate their own risks and to reduce preventable risk factors causing arteriosclerosis. We have also published two booklets, a global information and a manual, that is also useful for the online checklist which can be filled to evaluate one’s own progress. We are now looking for sponsors to fund us to translate them into other European languages.
We have finally succeeded – after a lengthy fight with the Health Authorities – Benlysta is now considered as a lupus medication with additional benefit.
Our postcard project ‘Lupus Crossing’ is still going on and we have received more than 300 butterfly postcards from 40 countries conveying their support towards lupus patients around the world.
Ms Bernadette Van Leeuw reported: we have 8 people on the Board and we are supported by 3 doctors who are involved in our Association. Although we are a small country, we have 4 regional groups, however, we work very well together.
This year we had two conferences on lupus and fatigue. We had a lot of activities for World Lupus Day and, to raise funds, we had a motor show. We have a newsletter and we also have a newspaper. During September we chose the 10 most important articles and issued a booklet. Additionally, we had the opportunity to speak about lupus on the radio as one of the most important charities in Belgium is supported by the national radio and supports patients with disabilities from rheumatic disease.
We also support sports and we gave funding to a clinic with a view to a project to see if sport can help lupus people with their fatigue.
d. France - Lupus
Ms. Anne Charlet informed that she has been involved in Lupus France for 2 years. We all have the same objectives but our main objective is education. It is estimated 21,000 lupus patients in France and our main aim is education and research as much as we can.
Last year, we were able to give a donation of 10,000 euros to research. We are lucky we have an insurance company who supports us and although they don’t give us money, they take care of all of our publications and mailings.
Some photos were shown illustrating various areas where activities took place, usually involved in education. For World Lupus Day, we had organized a patchwork group where people paid 5 euros and embroidered people’s names and made a quilt and that has been going around France. We had organized races and we had earned 2,000 euros. Additionally, we organized a walk and a blues concert for raising money. We also had a ‘College” it is a college for children, and they run for lupus and raised around 6,000 euros therefore, altogether, we raised 9,100 euros.
As we try to become more modern, we have a Facebook page which gets a lot of discussion. Next year we hope to welcome you to Paris for the LUPUS EUROPE Convention.
Ms. Augusta Canzona and Mr. Davide Mazzoni said the Italian Group had celebrated their 25th anniversary this year and had a huge event in Bologna. They continued: We also had a Lupus Day, Annual Members Meeting, National Day and Patients Day with great success. Photos were illustrated of all the activities and the members involved.
We have 200 patients with 12 members on the Board and 3 Medical Advisers. However, there will be new elections next year therefore, there will be some changes. We have a panel of 45 experts and we meet every 2 years with 13 regional groups and we all as lupus patients work for a healthy living. We organize meetings to increase understanding of the illness and we have self help groups for patients and their families. We finance research, training for young doctors and other initiatives to improve patients’ conditions. We finance every year 2 scientific projects specific for lupus for 30,000 euros each and 2 of 20,000 euros each.
We have 7 clinics around Italy and we are co-funding two projects for lupus patients. We do not attend EULAR meetings but we support young doctors to be present and they report back to us. We have a website and a Facebook page as well as a free line for psychological support. The month of October is devoted to awareness of lupus and we have a patient meeting and publish articles in the press. We also have a violinist in order to raise funds.
f. France - AFL+
Ms. Andree Hamon said in March and April of this year, in the presence of AFL+ two evening had taken place. In French the word evening has rather a festive connotation whereas in English there is a difference between evening and party. But there, for the first, it was question of a meeting on systemic diseases, organized in Paris by the Club Rheumatism/ Inflammation and, for the second, on “The Hand is in a State” Hospital Sainte Blandine, at Metz.
Two important events to commemorate on the 8th World Lupus Day, more a press conference in Strasbourg:
•About sixty racing cars coming from many regions of France have raced on the famous Charades’ racing circuit situated at the heart of the chain of mountains. Drivers have performed five hundred first race and so collected funds for the Association.
•A motorbike show at Manom Yutz.
The AFL+ were present at National Debate on the Dependence, Medical meeting at Haute Vienne, General Assembly CISS Normandy and Dijon, Internal Medicine Congress, Arthritis Fondation Courtin, Telethon, Dermatology, Rheumatology and Internal Medicine Congress, held in Paris.
g. LUPUS UK
Ms. Yvonne Norton reported that a number of groups within the UK are starting to have Lupus Information Days as opposed to their usual AGM’s. Explaining the presentation slides she said: “This was actually one that Peter and myself organized a few weeks ago. We had presentations on exercise, cosmetic camouflage, medication and clinical research.
During World Lupus Day we had Stephen Fry, who has 5 million followers, ‘tweeting’ people to go on LUPUS UK website and also Sarah Brown and Samantha Fox, whose mother suffers from lupus, did the same. We had 5,470 ‘hits’! We use Facebook a lot and on World Lupus Day, many members changed their profile pictures to butterflies. Also, members were asked to text/e-mail 10 people who do not have lupus.
A range of posters are used for display and the interactive bookmark produced for children in 2011 was repeated along with a pretty butterfly poster. The LUPUS EUROPE project “Make Lupus Work” was highlighted on the LUPUS UK website and Facebook page.
Several Regional Lupus Groups also used the special poster on their websites. We had the YouTube film “someone you know has lupus” which showed the difference between two young ladies, one with lupus and one without lupus, first thing in the morning; from waking up to leaving the house for work, the girl with lupus took 2 hours. This was genuine and the girl did have lupus.
LUPUS UK supported EULAR by donating English-language leaflets and posters and we were there representing LUPUS EUROPE and LUPUS UK. The funding for LUPUS UK Specialist and Research Nurses has now been extended from 3 to 5 years as we now have the funds to do so. Funding also continues for research projects throughout UK.
The argument with NICE with regard to Benlysta is still going on with appeal after appeal after appeal! However, a final outcome should be known by end of this month. Benlysta is being used in UK but we have to get help from our Primary Care Trusts and this can prove unfair to patients as one patient may be able to receive help whilst another cannot.
A few figures from our website: During September 2012 we had 23,995 website visits, the YouTube film had 14,209 viewings on 26 October, whilst the YouTube cartoon “What is Lupus” had 7,296 viewings. In October, Facebook had 3,736 followers whilst Twitter had 1,925. Health Unlocked (people talk about their problems and seek advice) had 2,040 followers.
We have produced a DVD for the newly diagnosed patients and a booklet that goes with it and all our publications have been revised and reprinted in the last couple of months; we also have a new booklet on pregnancy.
Lupus Awareness Month was launched on Facebook and website. A poster of a young lady was illustrated that made some people uncomfortable. The girl, Karen Fox, in her 40’s, had not been able to do very much because of her lupus, however, she started to feel better, went to college and this ‘painting’ came out of the project she worked on. It was seen by someone involved in LUPUS UK and asked if we could use it. Karen gave us permission and we put a text to it and the logo. Karen also gave permission for anyone to use it if they wish. This, purely coincidentally, came out as we were ready to launch ‘Unmasking Lupus”.
Ms. Norton explained what ‘Unmasking Lupus’ is. Basically, it is a competition on two levels. The member countries that wish to take part, tell their members that there is a competition for a painting, a drawing or a photograph, depicting what lupus means to them and also to write a few words as to why they chose that particular theme.
The entries will go to the member country and each country will have a panel and choose the winner from those entries. It is hoped that these entries may be used as a poster, possibly for World Lupus Day, in the countries concerned. The winning entries will be put through to a European competition and the European winner will be announced at EULAR. All the winning entries will be part of an exhibition at EULAR with someone well-known awarding the overall winning entry. This could also become a LUPUS EUROPE poster. It is planned that a free-of charge booklet depicting the entries will be published.
Presently, Ms. Norton just needs to know which countries will be taking part and information will soon be sent out to countries that have not already been informed.
Saturday - Treatment update
•Treat to Target in SLE or T2T Lupus – the EULAR task force has defined 12 items for treatment with 4 overarching principles – to address the key issues when deciding on treatment plan for the individual person with lupus. The final key actions and governing principles will be presented at EULAR 2013 in Madrid.
•Benlysta - Many national groups have been much involved with the national approval of belimumab (Benlysta – trading name) for the sake of having an alternative treatment in lupus, proving the established benefits of employing this treatment compared to the established plan. Now most are waiting for the 4th appeal at NICE, National Institute of Clinical Evidence, UK, because the ruling for possible admendment to treatment plan would give interesting prospects for many.
•It is also now understood that the present set of understanding of lupus is not enough – only catching the half picture. MyLupus app could show some interesting results and provide knowledge on what it is that makes lupus a terrible disease.
•Online questionnaires and other such preparations would provide good knowledge to disease as well as understanding of how it is to live with the disease.
Living with Lupus – next step
Living with Lupus is the theme for the two surveys LUPUS EUROPE has been performing the past years and where the results have been presented in the medical community as well as within the patient network.
Three issues came out of the survey results - Career, Fatigue, Quality of Life – that are important to people with lupus in Europe. These issues have been brought forward in some actions taken by member groups nationally. These case stories from Holland, Italy and Denmark were presented as inspiration to the community. An information kit based on these presentations will be made available for the members during Spring 2013.
MyLupus app – an app developed to address the personal value of registering disease influence on a daily basis in order to apply coping measures as well as creating a basis for communication with consulting specialist on disease impact and manifestations.
The app was developed from inspiration from a meeting between lupus representatives, GSK and representatives specialized in communication and S/W development, facilitated by Pshycologist Elizabeth Hale, Dudley Centre of Lupus, UK (with many years’ experience of treating lupus patients in her clinic).
The idea and perspective of having such an app for the individual as well as the prospect of what valuable information could be generated from the app’s use, triggered the discussion on whether it was an idea to endorse it or rather a project to be involved with to ensure best use of data collected.
This project was well received by the delegates and it was a clear decision to have the Board involved.
Detailed information on the app, the functions, the project organization, testing and use will be the next step of LUPUS EUROPE involvement to be shared with members.
LUPUS EUROPE Tomorrow
LUPUS EUROPE Tomorrow – the introduction to the workshop was a brief recollection of what was the Strategic Plan 2009-2012 and presentations of results these past four years together with issues remaining to be achieved, yet still need/wanted – like secretariat.
“What do you expect of LUPUS EUROPE tomorrow?” was the question placed for the Dialoogle exercise where pictures help bring forward the vision, expectations and dreams of where delegates envision the role of LUPUS EUROPE in the coming years. This input will be used for the Strategy Planning Workshop to be scheduled when the new Board is in place.
The Saturday programme brought rather hefty sessions where we discussed some central issues. The newly elected Board has heard the ideas and general sentiments.
The Convention came to an end with the first Meeting of the new Board of Trustees taking place within the hotel.
Following the Trustee Meeting, all delegates still at the hotel joined an organised sightseeing tour. Lupus Cyprus had arranged a completely accessible bus (much appreciated by Ms Norton) with an excellent courier and driver. From the hotel in Nicosia the bus headed for Larnaca with the courier pointing out and describing interesting buildings and sites along the way. On arrival at Larnaca everyone left the bus and walked the short distance to the Church of St Lazarus where most of the group visited the tomb of St Lazarus, patron saint of Larnaca.
There was time for a leisurely walk along the main shopping street where gifts were purchased by several people. The walk continued back to the bus by way of the promenade and it was fun to see a model Father Christmas, complete with sleigh and a reindeer, looking out to sea in the darkness - the only sign in the locality that Christmas was not too far away.
Back in the bus, the destination was back to Nicosia and a fairly long walk from the car park to the town through dark, narrow alleyways lined with small cafés and more small shops leading to a pedestrian area with large stores. The courier led the way to two active Green Line Crossing Checkpoints and, after explaining why they are set up and the role they play, led the way through more dark back streets, finally saying ‘Bye, bye, and have a good evening’ outside a small taverna. It was so good that we had a guide who knew her way around the city, it is doubtful that anyone from the group would have taken that walk unaccompanied.
The evening turned out very well. A good ‘meze’ was served with entertainment of traditional Cypriot dancing and music. At the end of the evening, thank-you gifts were presented from LUPUS EUROPE. Mr. Peter Norton, after 10 years as Treasurer, received one can of beer (!), Ms. Yvonne Norton, Chair for 4 years, received a gift she had organised but intended for someone else – sense of humour needed here! Others who had worked hard to make the Convention a success, including Mr. Marios Kouloumas, Ms. Stalo Christoforou, Ms. Foula Markidou and other members of Lupus Cyprus received appropriate gifts that will, hopefully, remind them of the 23rd LUPUS EUROPE Convention held in Nicosia, Cyprus, November 2012.
Acting Convention Secretary
Yvonne Norton MBE