INTERNATIONAL CONVENTIONS FOR PATIENTS WITH BEHCET'S DISEASE

Organising Committee

President:

Professor Shigeaki Ohno

Professor & Chairman, Hokkaido University Graduate School of Medicine, Department of Ophthalmology & Visual Sciences. Chairman, Ministry of Health & Welfare Specified Diseases, Behcet’s Disease Research Committee of Japan. Member, Executive Committee of International Society for Behcet’s Disease.

Chair:

Dr Tomomi Nishida

Department of Ophthalmology, Yokohama City University School of Medicine. Doctor, Saiseikai Yokohama City Nanbu Hospital.

Vice Chair:

Dr Wafa Madanat

The Jordan Hospital, Amman. Member, Council and International Scientific Committee of International Society for Behcet’s Disease.

Secretary:

Mr Barrie Seaman

Treasurer, UK Behcet’s Syndrome Society

Conventions held

19-22 May 2000

Yokohama, Japan

27-29 June 2002

Berlin, Germany

Next Convention

24-27 October 2004

Antalya, Turkey

CONFERENCE REPORT  BERLIN, 27-29 JUNE 2002

Hosts:

The Convention was held at University Medical Center Benjamin Franklin, the Free University of Berlin, Hindenburgdamm 30 12200 Berlin, Germany.

The Organising Committee wish to thank the Executive Committee of the International Society for Behcet’s Disease (ISBD) for their kindness in accommodating this Convention alongside the 10th International Conference on Behcet’s Disease. In particular they record their appreciation of the advice and co-operation given by Prof Christos Zouboulis in helping with the arrangements.

They also wish to place on record their gratitude to Mrs Adeltraud Muller and her German Support Group, ‘Leben mit Behcet’ for organising the session “The German Way”.

Medical Panel:

Prof Susan Lightman

Dept of Clinical Ophthalmology, Moorfields Eye Hospital, London

Dr Klaus Fritz

German Med Practice Network on Adamantiades-Behcet’s Disease

Dr Richard Powell

Clinical Immunology Unit, Queen’s Medical Centre, Nottingham

Translators:

German

Ms Michaela Wies

Japanese

Ms Okamoto-Ellenburg

Conference Secretariat:

RKM Konferenzmanagement, Theklastrasse 12, 12205 Berlin, Germany

Sponsors:

Delegates travelled to, and registered for, the Convention at their own expense. The small administrative costs were underwritten by the UK Behcet’s Syndrome Society.

Delegates:

Diana Bartosz

Germany

Dorota Deppe

Germany

Jochen Deppe

Germany

Akiyama Etsuko

Japan

Uenal Goekce

Germany

Johannes Haid

Germany

Herr Hessmar

Germany

Iris Marie Jakobsen

Denmark

Fumie Kawakatsu

Japan

Noriaki Kikuchi

Japan

Helen Lane

UK

Kai Li

UK

Kerstin Lohmann

Germany

Wafa Madanat

Jordan

Angela Martin

Germany

Aaron McPeake

UK

Junko Mitsuhashi

Japan

Adeltraud Muller

Germany

T.K.Nakagawa

Japan

Minoru Nishida

Japan

Tomomi Nishida

Japan

Atsuko Nishigami

Japan

Tsukasa Oguri

Japan

Shigeaki Ohno

Japan

Kanu Nitz Okubo

Japan

Barrie Seaman

UK

Jamal Tamimi

Jordan

Masayoshi Tanio

Japan

Claudia Vasconcelos

Portugal

Rui Vasconcelos

Portugal

Michiko Wakayama

Japan

Andrew Wright

UK

Valerie Wright

UK

Takeru Yoneyama

Japan

Tada Yoshiaki

Japan

Thu 27 June (am)

The 2^nd Patients Convention joined with the 10^th International Conference on Behcet’s Disease for the opening ‘Welcome Address’ which was introduced by the Conference President, Professor Christos Zouboulis from the Department of Dermatology at the University Medical Centre, Benjamin Franklin. Following this the joint session then received a lecture from Herr R. Winau about the two personalities most associated with the discovery of Behcet’s Disease, Hulusi Behcet (1889-1948) from Turkey, and Benedictos Adamantiades (1875-1962) of Greece.

The Patient’s Convention was formally opened by Professor Shigeaki Ohno who welcomed everyone and expressed his wish that delegates should gain both knowledge and mutual support from meeting together in this way. He felt that the Conventions were very important but recognised the difficulty of organising them when Support Groups were run by volunteers. He felt that a decision would have to be made as to whether they should be held every two or every four years.

Following Professor Ohno’s remarks the ‘Declaration of Yokohama’ was read to delegates in Japanese by Mr Minoru Nishida and in English by Mrs Helen Lane.

Following further introductions and information the delegates adjourned for tea and coffee in the same time-slot as the Medical Conference and took part in the viewing of the extensive exhibition of posters illustrating research work and studies being carried out throughout the world.

The pre-lunch session then consisted of a series of individual presentations by delegates relating their own experiences of ‘Health Care and Treatment’.

Aaron McPeake (UK) spoke with humour and conviction about the lengthy and distressing process by which he ultimately received his diagnosis and reflected on the situation experienced by patients in the UK. He also commented on his first perceptions of the role of support groups.

The Convention was then joined briefly by Professor Colin Barnes, President of the ISBD, who added his welcome to Berlin and gave his best wishes for a good meeting.

The next speaker was Jamal Tamimi (Jordan) who told of his own difficult early experiences but related that he felt that his worst periods of illness might now be behind him. His personal dream was to make ‘visual aid’ products so that Behcet’s patients could benefit. He believed that continuing dialogue by patients across the world was important and he hoped for progress on this in the coming years.

Kai Li (UK) described his personal circumstances and his diagnosis in 1981 when he suffered all the major symptoms of the disease. He described the treatment he had received and the dosages of the various drugs prescribed. His stomach had been the worst affected part of his body and he has had three surgical operations so far. He explained the various side-effects he had experienced with the drugs used and also his personal strategy for coping with life as a Behcet’s patient.

Thu 27 June (pm)

The session was completed after lunch when Minoru Nishida (Japan) presented a brief history of his disease and the way in which it was for a time confused with tuberculosis. Mr Nishida is now completely blind but his other symptoms have become quieter with age.

The next session was devoted to a viewing of the Video “Let there be light” which was a marvellous record of the 1^st Convention held in the Shonan Village Centre, Hayama, Kanagawa, Japan in May 2000. The film was the work of a team led by Ko Nihashi from Sagamiya Shoten.

The next part of the proceedings were presentations on ‘Patient Support Group Activity’

Adeltraud Muller described the work of the recently founded German Group called ‘Leben mit Behcet’ which meets every 6-8 weeks. She said that the first helpline call to a new sufferer was likely to be a long one with much talk about the individuals symptoms. She stressed how important it was to create trust with the new member. Patients were generally recommended to go to University Hospitals. Following diagnosis advice would be given about drugs. Group meetings consisted of open discussions. Members often related their experience of arguing with doctors who were unfamiliar with the disease. Now 18 months old, the group has 45 members of whom 25 are Behcet’s patients. Lectures by physicians have been attended and it is proposed to go to a ‘Self-Aid Congress’ in the near future.

Takeru Yoneyama from the Japan Behcet’s Disease Association (Osaka Branch) gave a most interesting presentation on the history and work of the BDA in Japan. Behcet’s Disease was first recognised as a significant problem during the 1960’s when the Japanese Government began to estimate the social effect of incurable diseases and pollution related illnesses during the years of economic expansion. The Japan BDA was founded in 1970. Its head office is in Tokyo and there are more than 1,400 members. There are now some 15 separate affiliated branches. During its early years the movement lobbied government and campaigned for increased research and free treatment. Branches also respond to telephone enquiries from patients and their families and bulletins are published regularly. Though the incidence of Behcet’s Disease in Japan is unchanged the number of cases classed as ‘mild’ has increased over time. Due to economic difficulties the government is now reducing the amount spent on treatment and patients are faced with increased costs. The BDA is seeking to influence this development and preserve benefits won in the past.

Barrie Seaman then gave a short talk on the UK Behcet’s Syndrome Society, which was founded in 1983 and is still run entirely by voluntary effort. The membership is now more than 1,400. The Society offers telephone helplines, leaflets, a web-site, newsletters and an annual general meeting. The work of the helplines is done by 3 volunteers and there are usually about 100 new members every year. The Society is trying to raise funds so that it can appoint and pay a part-time Director as well as offer a ‘patient companion service’, mount an awareness campaign for doctors, and increase the quality and frequency of newsletters. Barrie indicated the results of a recent membership survey. This showed that members were very keen to support and contribute to research projects and also to increase awareness amongst medical practitioners in general so that diagnosis of the condition might happen more quickly.

Following the afternoon tea and coffee break a business meeting of Patient Group Representatives was held to discuss co-operation in general and the staging of future conventions in particular. The opportunity to hold another convention in 2004 alongside the 11^th International Conference in Turkey was raised and though this would once again mean a short time for planning, it was agreed to hold the 3^rd Convention then. The meeting unanimously elected the present Organising Committee to continue in office. It was agreed that strenuous efforts be made to obtain significant sponsorship so that there may be a fully representative attendance from as many countries as possible. It was also felt important that there should, if possible, be simultaneous translation facilities. The outcome of the meeting was therefore as follows:-

• Go ahead with future conventions
• Hold them every two years if possible
• Hold them in conjunction with Medical Conference; there are many advantages
• Empower the Organising Committee to plan for Turkey Oct 2004

The following additional aims were approved:-

• Help new support groups to start
• Foster friendship and co-operation between support groups
• Improve the flow of information between groups
• Support research
• Provide greater insight into treatment methods

At 7.30pm the delegates from both the Medical Conference and the Patients’ Convention joined together for a ‘Get Together Party’ with jazz music.

Fri 28 June (am)

Coffee and tea were available in the conference concourse as usual and delegates once more used the time to meet and discuss experiences with one another, and to continue viewing the large number of poster displays.

The entire morning session was then given over to a session organised by the host Support Group and entitled “The German Way”.

The session started with an introduction from Adeltraud Muller. She explained how her group had been helped to establish itself by the organisation known as ‘Kontakt und Informationsstelle fur Selbsthilfegruppen’ (KISS). Though the Government recognised the benefits of self-aid groups, more financial help was needed before a countrywide network could become established. She said that the most important need identified was helping sufferers to learn how to cope with their disease. She had set about attending lectures and obtaining relevant publications and hoped soon to see a web-site created.

(During Dr Fritz’s talk the convention was visited by Professor Zouboulis, President of the adjoining Medical Conference)

Adeltraud next introduced Dr Klaus Fritz, a dermatologist from the German Medical Practice Network on Adamantiades-Behcet’s Disease. Dr Fritz spoke of the importance of skin problems in the diagnosis of and treatment for Behcet’s Disease in Germany. He said that skin problems could often be the first symptom experienced by a sufferer. In Germany there are about 3,500 dermatologists and access to one is normally about one week’s waiting time. The network to which Dr Fritz belonged was in the course of setting up ‘centres of excellence’ to assist people with rare conditions such as Behcet’s Disease. Dr Fritz commented that, following diagnosis, patients often consulted the internet and crosschecked themselves for the existence of other symptoms. This underlined the need for a multi-disciplinary approach but, as Adeltraud herself commented, general practitioners were sometimes reluctant to refer patients to specialists. Also there were governmental budgetary constraints which currently worked against such a system becoming widespread. Dr Fritz spoke of the importance of advising patients about the side effects of the drugs frequently prescribed for the condition. Also the need for good advice on ‘alternative’ remedies and diet. He believed it was important for patients to set realistic goals for themselves and that it was very helpful if they were willing to take part in trials and studies.

The final part of this session consisted of a talk by Karen Klopsch from the Pensions and Insurance Ministry. Karen explained the government health insurance and rehabilitation programmes. Karen was keenly questioned by the German delegates on how these arrangements worked in practice.

The Convention adjourned to lunch with a vote of thanks to Adeltraud for her good arrangements and especially to Dr Fritz who not only generous in the time he gave to questioners but also performed his own German to English translating. The meeting also thanked Mr Nakagawa performing the translations into Japanese.

Fri 28 June (pm)

Following lunch the Convention received a lecture from Professor Shigeaki Ohno on ‘The role of genetics in Behcet’s Disease and immunological features’. This extremely interesting talk was very well received by everyone present and Professor Ohno was thanked for giving his time and for supporting the organisation of the Convention in such a direct and personal manner.

There then followed a ‘question and answer’ session conducted by a Medical Panel consisting of Professor Susan Lightman (Chair), Dr Richard Powell and Dr Klaus Fritz. As might be expected, there wasn’t enough time to deal with the many questions posed, which ranged across the full spectrum of interest; cause, cure, diagnosis, treatment, research and other associated issues. The Panel did its best and was warmly thanked at the conclusion.

Following the afternoon refreshments the Convention joined the Medical for a joint session, ‘Patients inform the ISBD’. This was introduced by the ISBD President, Professor Colin Barnes who congratulated the Patients on their achievement in staging the 2^nd Convention and said that he hoped that the present co-operation would continue in years to come.

The first address was given by Minoru Nishida assisted by Dr Tomomi Nishida. His presentation outlined the hopes of Japanese patients that researchers into Behcet’s Disease would one day be successful in identifying the cause and thus lead to more effective treatment. He also spoke of the importance of the relationship with medical practitioners in relation to the social aspects of living with the disease.

Next, Georgina Seaman from the UK Behcet’s Syndrome Society, gave a UK perspective on the day to day relationship between patients and doctors and gave instances where shortcomings led to difficulties on both sides. She cited a list of suggested improvements that would make the difficulties inherent in living with a complex multi-disciplinary condition easier to bear.

Jamal Tamimi outlined the approach of the Jordan Support Group and indicated the need for doctors to look at the disease through the eyes of the patient. He told the Conference how the group had come into being as a result of collaboration between both doctors and patients.

Adeltraud Muller presented an overview of the aims and objectives of her recently formed German Support Group and mentioned some of the principle difficulties experienced by her members.

Prof Barnes thanked the participants for their presentations and commented briefly on some of the detailed points they had raised. He posed the Conference a number of issues:-

• can patient groups’ assist regarding diagnosis and treatment?
• should there be a register of patients?
• should support groups recruit patients for research studies?
• should doctors belong to support groups and vice versa?
• should patients and doctors/scientists attend each other's conferences?
• should conferences be entirely separate?

Prof Barnes brought the days proceedings to a close with expressions of hope for future co-operation, building on the success of this event.

Delegates from both the Medical Conference and the Patient’s Convention were then transported by bus to the Komische Oper, Berlin for a performance of Verdi’s Traviata. This was a memorable and moving experience, much enjoyed by everyone. The Convention’s thanks go to Prof Zouboulis for his generous arrangements.

Sat 29 June (am)

Before the Convention reconvened, patients had the opportunity to attend two plenary lectures in the Medical Conference of direct interest; ‘Measurements of Improved Prognosis and Quality of Life’ by M.Bullinger of the University of Hamburg, and ‘Establishment of Multicentre Clinical registries as a basis for comparative evaluation’ by P.Martus of the Medical Faculty, Free University of Berlin.

Following coffee, tea and poster viewing the Convention then received a lecture from Dr Wafa Madanat about the experience of Jordanian patients and the way in which medical practice worked in there. She told about how the dream of a support group had been brought to reality and what their hopes were for the future. In particular she highlighted the situation for poor people in the developing world where treatment was often not free and where expensive drugs may not be available. This illustrated talk was very popular with the delegates and Dr Madanat was warmly thanked for giving her time.

The Convention adjourned outside so that group photos could be taken following which Barrie Seaman gave a brief report on the decisions of the business meeting about future conventions. The possible need for a permanent international body was mentioned but the present organising committee agreed to carry on as currently constituted and concentrate on staging the next convention where it was hoped attendance would be larger and more representative.

Sat 29 June (pm)

The formal proceedings of the Convention were then brought to a close with many votes of thanks and, following lunch, many delegates took their places on a sightseeing tour of Berlin arranged by the Conference Secretariat.

Some delegates attended the optional Conference Dinner at the Restaurant Alten Zollhaus, Prinzenstrasse, which was an event organised by the Medical Conference.

published by:

Barrie Seaman

e-mail: barrieseaman@compuserve.com

UK Behcet’s Syndrome Society

3 Church Close

Lambourn

Hungerford

Berks RG17 8PU

UNITED KINGDOM

January 2003