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IICPN Newsletter August 2004

Dear IC patient support groups and country contacts,

With developments in the IC world taking place at such a rapid tempo this year, our newsletter and website are aimed at trying to give you an overview of current activities and to keep you as up-to-date as possible. Consultations on new criteria and a new definition of IC/PBS continue worldwide. Although much of this activity and discussion is taking place internationally behind the scenes, including in the new ESSIC (European Society for the Study of Interstitial Cystitis), we had a chance to gain an impression of the way things are moving at the 3rd International Consultation on Incontinence (ICI) in Monaco in June. This meeting with its presentation by the IC/PBS committee, led by Professor Philip Hanno, is reported in detail on the IICPN Foundation website (click here).

At conferences this year we are seeing new emphasis placed on quality of life for patients in the urology world. This was underlined once again in Monaco. Patient support groups can also play an important role in helping fellow sufferers improve their quality of life despite their bladder handicap.

Interview with Dr Campos in Mexico

Following our interview earlier in the summer with Dr Nagendra Mishra from India concerning IC in his country, we are now pleased to be able to offer our website visitors an interview with Dr Jose Luis Campos Contreras, urologist in Mexico and medical advisor to the IC support group ACI-Mexico. It is particularly interesting to hear from him about the great difference having an IC patient support group has made in Mexico. The hard work of the support group is steadily increasing awareness and Mexican patients can now obtain information about their bladder condition in their own language, own culture and own country. Let us hope that this will now snowball throughout South America. There are already very positive signs.
New French IC support group

We were delighted to hear that there is now a new IC support group in France: Association Française de la cystite interstitielle, chairman: Françoise Watel, ci_france@hotmail.com. We wish her every success with her group and look forward to hearing more about their activities.

The IC support group in Quebec, Canada (Association de la Cystite Interstitielle du Quebec: www.cystiteinterstitielle.org) is also a French-speaking group, with an extensive website in French, and has been helping us to produce information in French for our IC info table at the annual conference of the International Continence Society (ICS) in Paris next week. While in Paris, we hope to be able to draw the attention of as many French doctors and nurses as possible to the existence of the new French group in France and the French website of the Quebec IC support group in Canada so as to make sure that French-speaking IC patients everywhere know about the existence of these groups and about the availability of information in their own language.
Toilet cards

We have now added toilet cards for urgent access to toilet facilities to the website in a number of different languages. As well as the English version, they are now available in French, Spanish, Italian, Czech, Danish, Portuguese, Dutch and Afrikaans. Grateful thanks to the doctors who helped us to produce these.

If there is no card in your language, please send us a translation in your language of the English text (both sides of the card) and we will be pleased to add it to the website. There is an explanation on the website regarding how to make a laminated version of these cards in an economical way.

IC and Associated Disorders

Sjögren's syndrome
This section of our website now has two more chapters translated into English of Dr Joop P van de Merwe's book for patients and professionals on all aspects of Sjögren's syndrome. There are currently 6 chapters available on the website. The remaining 8 chapters will be added gradually as translated. So keep an eye on this part of the site!

Although information on vulvodynia is available on our website, detailed information on this difficult disease that is frequently seen in combination with IC can be obtained from the National Vulvodynia Association (NVA: www.nva.org ). We also have a link on our site. This is a "must" for all sufferers from vulvodynia and for all doctors faced with treating patients with this chronic vulvar pain disorder. The NVA can provide you with information on the latest research into vulvar pain.

Useful website - NIDDK

Patient support groups seeking information for their members should not forget the site of the American NIDDK (www.niddk.nih.gov/) which has information on all aspects of urology and the bladder. Go to "Health Information", click on "urologic" then select kidney and urologic diseases, A-Z list. Some texts are also available in Spanish. There is no copyright on this information. It can be freely used (including the pictures) by the general public.

Symposiums: practical diagnosis and treatment

While Denmark held a meeting earlier this year on practical aspects of IC for doctors and nurses, urologists in the Netherlands are organising a urology symposium on the diagnosis and treatment of IC on 10 December this year in 's-Hertogenbosch which will include operating theatre presentations. This type of symposium is an excellent way of updating the general urologist on how to diagnose IC according to the latest international insights and how to treat their IC patients in the most effective way possible with treatment available in their country. 


IICPN Foundation brochure

The IICPN Foundation brochure on "Interstitial Cystitis: Diagnosis & Treatment" has once again been updated and is available on the website.

With kind regards,
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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