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IICPN Newsletter December 2004

Dear IC patient support groups, country contacts and friends around the world,

We are once again drawing to the end of another year and 2004 has been an exceptionally active year for the IC world. We have increasingly seen world attention focusing on painful bladder syndrome/IC and all its ramifications. PBS/IC has featured more than ever before on the scientific programmes of international urology/gynaecology congresses. This encourages doctors to go back to their own national organisation and request presentations on IC in their national urology conference. Once this happens, awareness and knowledge are increased within that country and far more patients receive the right diagnosis and treatment. However, there is still a long way to go. There are many, many countries where awareness among general urologists – let alone gynaecologists - is non-existent or minimal. This is where the patient organisations can play an invaluable role in helping to increase awareness. In 2005, the IICPN Foundation will continue to do its utmost to encourage the setting up of national or regional patient support groups by providing practical information and helping new groups adapt available information and resources to their own language and culture.



An international scientific committee on PBS/IC that was set up for the 3rd International Consultation on Incontinence (Monaco, June 2004, see report on IICPN Foundation web site under ‘News & Reviews’) met several times this year to discuss questions relating to a new definition of IC, diagnostic criteria and standard diagnostic procedures. A report on the committee’s findings will be published early in 2005 (and we will let you know when this takes place), but it should be emphasised that this is not the end of the story, rather the beginning since it is an on-going, evolving process. It will probably be some time still before consensus is reached on criteria, but in the meantime it is important for standard diagnostic procedures to be agreed on which are adaptable for different countries and their different resources. Since there are as yet no sufficiently reliable tests (e.g. marker tests) available for the diagnosis of IC, diagnosis is currently being made on the basis of the symptoms of pain and urgency/frequency and following exclusion of all other possible known diseases or disorders.


Mexico – a joint venture at the national urology conference

The IICPN Foundation and the Mexican support group undertook a joint project in Mexico where they together organised a first ever information booth at the Mexican urology conference in Mérida, 16-20 November. This kind of cooperation is an excellent way of helping small support groups organise a booth for the first time and thereby raise awareness in their country. It was a great success and can serve as a model for similar projects in other countries in the future. It was preceded by a meeting with Mexican patients, giving deeper insight into the specific problems in Mexico.cThe Mexican support group has now widened its scope to include PBS/IC, vulvodynia and incontinence. The new name is Asociación de Enfermedades Uro-Ginecológicas and the new website: www.asenug.org.

The full report on the Mexican project can be found on the IICPN Foundation website: click here

One aspect that became very clear in Mexico was that a considerable number of urologists have little working knowledge of English and therefore need detailed information in their own language. It is possible that this situation also applies to other countries in Latin America . It would therefore be very useful if PBS/IC could be included in the Spanish language programmes at the AUA and EAU annual conferences.


China – presentation at Chinese national urology conference

Awareness and knowledge of IC in China has hitherto been limited to small pockets of academic urologists (particularly centred in Beijing ) who have the opportunity to attend international conferences. The language problem seen in Mexico equally applies in China where relatively few doctors have an adequate knowledge of English to be able to benefit from scientific papers or websites in English. It is therefore essential for information on diagnosis and treatment to be available in their own language. Perhaps a pan-Chinese website would be a solution, with information for both patients and professionals.

I had the privilege of being invited to give a presentation on IC at the 7th Chinese National Urology Congress, 20-24 October in Chongqing . This was an ideal way of reaching the general urologists in this vast country. Despite the fact that probably half of the delegates would have had little knowledge of English (the slides were in both languages to make this easier), it nevertheless stimulated large numbers to request more information. Some of the doctors told me that a few patients seem to be in contact with each other through message boards on English-language websites and perhaps this will form a basis for a future support group or regional groups in China. The full report is on the website: click here


We heard from Françoise Watel, president of CI France (ci_france@hotmail.com), that her new support group succeeded in organising a first IC information table at the French urology conference in November. This greatly helped to advertise the existence of the French support group as well as increase awareness in France. This was a tremendous achievement in their first year as a support group.
Belgium support group "under construction"

Work is in progress in Belgium on setting up a support group for patients in that country. We will let you know when more details are known.
India – new support group to be launched

Our next project will be in India in January 2005 where the IICPN Foundation will be helping an IC patient, Indu Mishra, run a first IC info stand at the Indian national urology conference in Ahmedabad. It is hoped to launch a first national Indian patient support group during this conference. Indu Mishra can currently be contacted at moonlotus2001@yahoo.com. We will be providing more information and details in our next newsletter.
The Netherlands – IC symposium

The urology departments in ‘s-Hertogenbosch and Oss in the Netherlands took the initiative this year to organise a very practical symposium on the diagnosis and treatment of interstitial cystitis on 10th December. This included live sessions with cystoscopy, laser coagulation and tined lead implantation for Interstim neuromodulation. Speakers included Dr Jurjen Bade from Oss , Professor Kristene Whitmore from the USA and Professor J.J. Wyndaele from Antwerp, Belgium.
A report can be read on the website (click here).

Professor J. Nordling from Denmark was unable to attend the Dutch IC symposium due to the sudden death of his former colleague Professor Tage Hald whose funeral was held on that day. Professor Hald played an important role in making Herlev Hospital in Copenhagen a centre of excellence for IC and his death is a sad loss to the IC world.
Urology in developing countries

The Association of Surgeons of Great Britain and Ireland organised a meeting in London on Surgery in the Tropics – Making it happen on 5th October 2004. Although urology organisations such as Urolink originally operated mainly in the tropics, this work now takes place in many more developing countries. So this was a useful occasion for the IICPN Foundation to make new contacts and make our field of work known. Perhaps in the future some opportunity may occur to organise a joint project with one of the organisations operating in this field.
IICPN Foundation leaflets

The IICPN Foundation now has translations of its basic leaflet also available in Turkish and Hebrew, with more translations in the pipeline. Thanks are due to Dr Riza Baysal in Turkey for the Turkish translation and BioControl Medical in Israel for the Hebrew translation. Both are available on our website.
World Toilet Organization

IC patients everywhere will be delighted to know, believe it or not, that there is a World Toilet Organization (www.worldtoilet.org) based in Singapore . This non-profit organisation is aimed at improving public toilet conditions and breaking through the taboo that is still associated with talking about toilets. The 4th World Toilet Summit was held in Beijing 17-19 November 2004 and the World Toilet Expo and Forum is to be held in Shanghai 11-13 May 2005. It sounds as though the Chinese are taking their toilets very seriously indeed! And great news for Chinese IC patients!
New scientific literature

A selection of new scientific literature is listed on the IICPN Foundation website with links to Pubmed abstracts where available. This list is constantly updated. Patients and patient support groups may be able to obtain the full articles from university medical libraries that have a subscription to many of the journals.

The EAU Update Series, volume 2, issue 4, December 2004, focuses on Neurourology. All the articles in this Update issue are of interest, but particularly the article by Professor Jørgen Nordling from Denmark on Pelvic Pain and Interstitial Cystitis: Therapeutic Strategies, Results and Limitations. This gives a clear overview of the current situation regarding diagnosis/evaluation and treatment of PBS/IC.
Thanks to sponsors and supporters

Now that we are almost at the end of 2004, we would like to take this opportunity of thanking our sponsors: the Medtronic Foundation, Yamanouchi Pharma BV , Pfizer BV and Bioniche Life Sciences. And sincere thanks to the many people, too numerous to mention by name, who have supported us and our work in so many ways.

Special thanks also to the members of our Medical Advisory Board who have given valuable advice and help throughout the year.

Seasonal greetings

We send seasonal greetings to everyone around the world and wish you all a happy, successful and above all healthy 2005.

With best wishes
Jane Meijlink

International Interstitial Cystitis Patient Network Foundation
Burgemeester Le Fèvre de Montignylaan 73
3055 NA Rotterdam
The Netherlands

The IICPN Foundation does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. Information provided in IICPN Foundation emails, newsletters and website is not medical advice. The IICPN Foundation recommends patients to consult their own physician before undergoing any course of treatment or medication.
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updated 29.05.2007 13:53 © 2006-2018 International Painful Bladder Foundation (IPBF). All rights reserved.