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Congreso Nacional de Urología Mérida, Mexico, 16-20 November 2004

Successful joint project IICPN Foundation and Mexican support group at the Congreso Nacional de Urología Mérida, Mexico, 16-20 November 2004


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Our visit to Mexico began with a day in Mexico City, the biggest city in the world, to meet with some of the patients who are members of the Mexican support group. This support group has now widened its horizons to include not only IC/PBS but also vulvodynia and incontinence. It now has a new name: Asociación de Enfermedades Uro-Ginecológicas (www.asenug.org). This should also make it a little easier to raise funds for the support group. Like many other support groups around the world, they have found it very difficult to find sponsoring for IC alone since funding tends to be focused on life-threatening diseases or disorders affecting large groups of the population rather than on quality-of-life-wrecking diseases that affect smaller numbers of people!


Breakfast with the patients

President Florentina Ferreyra had organised this convivial and relaxed breakfast get-together at her home on 14th November with the help of her PR officer Mayra Zamora. They explained that they were now getting calls from many new patients as a result of several very successful radio appearances by members of the support group. A separate section has been created within the group for vulvodynia patients since this painful and difficult-to-treat disorder appears to be exceptionally widespread in Mexico. One of the patients at the breakfast meeting had IC with Lupus (SLE) while another had the more unusual combination of IC with CREST (a form of scleroderma). They told me that many IC patients are afraid to leave their home and consequently become very isolated. I certainly didn’t have the impression that there were a lot of public toilets in Mexico other than in tourist centres or hotel areas, so it can’t be easy for people – particularly women - with a bladder problem. This is especially the case in the vast metropolis of Mexico City with its infamous traffic jams.A major healthcare problem in Mexico is the fact that many people are not covered by medical insurance, or have inadequate cover, and quite simply cannot afford the more expensive forms of treatment. One patient told me that she had been forced to stop treatment after just one session due to the cost. Even diagnostic procedures become unaffordable luxuries if you have to pay for your own cystoscopy and biopsy. This meeting with the patients certainly gave me much deeper insight into the specific problems that exist in Mexico and into the social and medical culture as well as the economic issues.The patients greatly appreciated the fact that the IICPN Foundation had come to help with the first ever information booth at the national urology congress in Mexico. They said it was vital to increase awareness among medical professionals and that in order to achieve this they needed the back-up of the IICPN Foundation’s experience and know-how for this important first booth. The Mexican group is the first national support group in Latin America and, since there is no tradition of patient advocacy or self-help groups in Latin America, it will serve as a contact point and role model for other potential groups in the region.


On to Mérida

The following day we flew to the attractive city of Mérida in the Yucatán region and stepped out of the plane into blistering heat and oppressive humidity. We were later to discover that the hotter it is outside, the colder the air conditioning is likely to be in the congress centre!! And once again, as at the ICS conference in Paris, our booth was located directly under an air conditioning duct!


Booth received much attention

Being a relatively small exhibition, our booth received considerable attention from urologists not only from Mexico but also from other Central American states. This not only increased awareness and knowledge of IC and associated disorders, but also of the existence of the support group and its different sections.

There are around 1800 urologists in Mexico, of whom approximately 10 female urologists. The congress itself was attended by just under 1000 delegates.


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A booth with Florentina Ferreyra (right) and Jane Meijlink providing information on interstitial cystitis/painful bladder syndrome, vulvodynia and incontinence was organised jointly by the IICPN Foundation and the Mexican support group for the very first time at the Mexican national urology congress in Mérida, Mexico, 16-20 November 2004.    


The information material on IC and associated disorders, vulvodynia and incontinence was greatly appreciated and urologists stopped to talk at length about the problems with IC patients, diagnosis and treatment. Much more in-depth information on diagnosis and treatment is required in Spanish. Urologists with a working knowledge of English who attend international conferences had some knowledge of IC, but there was little or no awareness among the many doctors with no English. As we already observed in China in October, this again underlines the need for information, symposiums and courses to be provided in the language of the country. We believe that endeavours should be made for IC/PBS to be included in the Spanish-language programmes of the major international urological congresses. The support group’s medical advisory board, led by Dr J.L. Campos, is now planning to organise a course on IC/PBS at a future conference. This will certainly go a long way towards improving knowledge of diagnosis and treatment.

This year the Mexican urology conference programme had nothing at all on the subject of the painful bladder. It is to be hoped that the Mexican urologists themselves will ask their committee to include items on this subject at their next urology conference.xIt was again apparent through our contacts on the booth that the urologists have very many vulvodynia patients and they were therefore pleased to be able to take leaflets provided by the National Vulvodynia Association in the USA (www.nva.org). It would certainly be useful to have detailed information on vulvodynia available in Spanish for Latin America.xAlthough there are signs that the IC pharmaceutical industry is beginning to show a glimmer of interest in Mexico, most brand-name products for the treatment of IC are still unavailable in the country. It is to be hoped that activities of the support group will help to improve this situation as more and more patients are correctly diagnosed.


Thanks to sponsors

Very many thanks to the sponsors who made this valuable and successful project possible: the Medtronic Foundation that sponsored the IICPN Foundation and the booth and Lilly/ Boehringer Ingelheim that sponsored the Mexican support group and transported the information material from Mexico City to Mérida and Bioniche Life Sciences. Without the generosity of such sponsors, projects like these - that achieve so much within a short space of time - would not be possible. New patient support groups find it difficult to get off the ground and greatly value all practical help in the initial period. This project In Mexico can ideally serve as a model for similar projects in other countries in the future.

 
Jane Meijlink
   
updated 10.02.2006 14:57 © 2006-2018 International Painful Bladder Foundation (IPBF). All rights reserved.