Dear IC patient support groups, country contacts and friends around the world, |
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The ICS/IUGA conference in Paris in August was another important opportunity for the IICPN Foundation to continue increasing awareness of IC/PBS and associated disorders around the world by distributing a wide range of information on IC and associated disorders. This was greatly appreciated by doctors from all imaginable countries and will hopefully filter through to their patients around the world.
We would like to thank the ICS for providing the complimentary booth and Medtronic for generously sponsoring us.
The fact that the conference was being held in France this year provided the perfect chance to do everything possible to promote the new IC support group in France: Cystite Interstitielle France (President Françoise Watel, ci_france@hotmail.com) and ensure that the many French-speakers at the conference were also aware of the existence of the Canadian Quebec support group French-language website:
www.cystiteinterstitielle.org
The leaflet and booklet we had received from the National Vulvodynia Association in the USA (www.nva.org) attracted a great deal of interest and this is clearly an area where all possible information is welcome for both patients and professionals. |
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Our report on Paris includes a review of the ICS terminology course (actually more of an interactive workshop), in which the issue of the definition of ‘urgency’ was discussed in great detail and also the definition of nocturia (also of interest to the IC movement), and a report on the ICS Urgency Debate which likewise focused on the definition of the term urgency.The ongoing terminology debate and controversy on the definition of the term ‘urgency’ continued at the ICS conference. The ICS is proposing to reserve this term exclusively for the symptoms of patients with incontinence problems by adding a new clause. However, it became clear in the ICS Terminology course and during the Debate on Urgency that everyone has their own often very different ideas as to how urgency should be interpreted. Nevertheless, the one factor that all patients have in common – whether they suffer from incontinence, IC/painful bladder or prostate problems – is that they need to find a toilet urgently, for whatever reason related to their condition (fear of leakage, pain etc.).
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Many of the presentations at the ICS/IUGA conference, including the excellent State of the Art lectures, can be enjoyed on webcasts produced by Prous Science on www.ttmed.com/urology/ICS2004. You do need the right software on your computer to access webcasts (and don’t forget to turn up the sound volume on your pc!!), but information is provided on the ttmed site or can be obtained by emailing webcast@prous.com. Webcasts are an excellent way of being an ‘armchair delegate’!
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The IICPN brochure in French “La Cystite Interstitielle” is now also available on our website. Many thanks to Françoise Watel for giving the translation of this brochure a final linguistic screening.
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The new French IC support group issues a regular newsletter in French. Please contact President Françoise Watel if you are interested in receiving it (ci_france@hotmail.com).
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Together with ACI-Mexico (President Florentina Ferreyra), the IICPN Foundation is organising an IC information booth at the Mexican national urology conference in Mérida, Yucatán, 16-20 November 2004. Since this conference attracts urologists from other countries in Central America, this will be an excellent opportunity to raise awareness of IC in this region of the world. Hopefully it will have a spin-off throughout South America. There are already the beginnings of support groups in other South American countries. Ourvery practical guidelines on the website on how to set up a support group, now also available in Spanish, may provide some tips for starters. While in Mexico, we will also be attending a meeting of Mexican IC patients.
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The annual conference of Indian urologists in Ahmedabad in January 2005 will be the perfect opportunity to distribute information and raise awareness about IC in India. It is also hoped to officially launch a first patient support group in India at the same time. Together with Dr Nagendra Mishra, I myself will be there in India in January to provide help and support as required. This is pioneering work for IC patients and will hopefully lead to many more patients receiving the right diagnosis and treatment.
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Dr Hikaru Tomoe, a Japanese woman urologist well-known to those who participated in the Kyoto ICICJ consultations, has written a book specifically for painful bladder patients. This Japanese book (translation of the title is ‘Understanding Cystitis’) is available in Japanese bookshops or directly from the publisher Makino Shuppan www.makino-g.jp.
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There is a global call for patients to participate in a multicenter clinical study (named Cistic) on sodium hyaluronate (Cystistat®). Further details are available on our website or contact cystic@bioniche.com. |
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A selection of abstracts of new scientific literature is included on our website. This is constantly being updated. |
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If you haven’t yet taken a look at the Executive Committee Summary and Task Force Report: Epidemiology of Interstitial Cystitis, from the meeting on October 29th, 2003 in Bethesda, you can find it at: http://www.niddk.nih.gov/fund/reports/ic/task_force_summary.pdf
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The National Vulvodynia Association quarterly Research Update E-newsletter is now available on:
http://www.nva.org/for_medical_professionals/medical_newsletters.html
with details of the latest research into many different aspects of vulvodynia.
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In our next newsletter we look forward to reporting on the Mexican project and progress being made by IC support groups in South America.
Best wishes,
Jane Meijlink |
Chairman
International IC Patient Network Foundation
tel/fax: +31-10-4613330
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