information of argentina newspaper about ic

[diany]

Micciones frecuentes y dolor, signos de una dolencia poco conocida
La cistitis intersticial se presenta mayormente en mujeres jóvenes. Se la confunde con infecciones urinarias. Testimonios de quienes la padecen

Florencia O'Keeffe / La Capital

Dolor, ardor y malestar en la vejiga, urgencia para orinar, micciones frecuentes. La cistitis intersticial es una enfermedad de la vejiga urinaria que tiene síntomas comunes a otras enfermedades y es poco conocida por la población e incluso por los médicos, por lo tanto, a la mayoría de los pacientes el diagnóstico les llega tarde, o nunca. Puede afectar a ambos sexos pero mayormente se presenta en mujeres jóvenes. Las características de esta patología crónica provocan que quienes la padece tengan dificultades para desarrollar su vida normalmente. "Nos conocemos todos los baños de Rosario", relatan con precisión y tratando de no perder el humor Alejandra Reviglione y Liliana Bacchi, a quienes les diagnosticaron la enfermedad hace poco tiempo (ver aparte) después de muchos años de angustia, de recorrer decenas de especialistas y escuchar los diagnósticos más disímiles.

Aunque aún no tiene cura y los tratamientos no funcionan en todos los casos, una vez diagnosticada existen opciones terapéuticas que pueden aliviar la sintomatología. El urólogo Germán Chamas, dijo a La Capital, que la cistitis intersticial "es una enfermedad crónica" que se encuadra en lo que se denomina síndrome de dolor pelviano y que la dificultad para diagnosticarla reside, por un lado, en que es una patología no demasiado frecuente, y por otro, porque el diagnóstico es básicamente clínico. "No hay un estudio específico para decir que un paciente tiene la enfermedad, ni siquiera la biopsia nos ofrece un patrón fisiopatológico característico", manifiesta.

Para diagnosticarla los médicos se valen de síntomas y signos. "Entre los problemas que aparece con frecuencia en la cistitis intersticial están el dolor, el ardor y la pesadez en la vejiga. Los pacientes suelen referir molestias, pinchazos. También las micciones frecuentes, una necesidad imperiosa de orinar, y la sensación de vejiga llena que no desaparece luego de pasar por el baño. Y aunque los síntomas son variables, en general todos afirman que tienen un dolor molesto e incapacitante que impide trabajar con normalidad y hacer las tareas diarias", explica.

Los síntomas están vinculados a una inflamación importante de la vejiga pero no se sabe exactamente qué la produce. Como esos síntomas se parecen a los de una infección urinaria, no es extraño que los pacientes sean estudiados por esto. "Para sorpresa de muchos médicos, los pacientes tienen todos los síntomas de una infección, pero los urocultivos son negativos", puntualiza Chamas.

Las molestias frecuentes trastocan tanto la vida cotidiana -hay personas que suelen ir al baño hasta 60 veces por día- que la angustia y la depresión suelen ser comunes entre quienes la padecen. Al dolor pélvico y las ganas interminables de ir al baño se suma la imposibilidad de ponerle nombre y apellido al problema, lo que provoca incertidumbre y hasta conflictos familiares porque las personas vinculadas afectivamente al enfermo empiezan a pensar que no tiene nada físico y se trata de un problema psicológico. Para peor, Chamas destaca que los síntomas suelen empeorar con el estrés. Además, en las mujeres, la menstruación exacerba las molestias, al igual que las relaciones sexuales.


Opciones de tratamientos
El urólogo consultado afirma que las pacientes suelen llegar al diagnóstico después de muchas consultas a distintos especialistas, entre ellos los ginecólogos. "Les suelen pedir mil estudios y no aparece nada significativo", aclara.

"Estamos hablando de una enfermedad crónica de difícil diagnóstico y tratamiento; la única medicación específica no es barata y pocas obras sociales la reconocen. Hay otros medicamentos que pueden dar alivio pero no siempre son efectivos", explica el urólogo. Los pacientes con cistitis intersticial suelen optar con frecuencia por medicinas alternativas, como la acupuntura o la homeopatía, con el fin de mejorar su calidad de vida.

Por último, Chamas señala que en países del primer mundo se sabe bastante más que en la Argentina, y que existen asociaciones que nuclean a los enfermos brindando contención y asesoramiento. Incluso, comenta, que además del acceso a todos los medicamentos en forma gratuita, se les da a los pacientes una tarjeta con la que tienen derecho a pasar primeros en los baños públicos.
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Micciones frequent and pain, signs of a little well-known ailment the interstitial cystitis appear mainly in young women. Is confused it with urinary infections. Testimonies of those who suffer it Florence ÓKeeffe/The Capital Pain, ardor and malaise in vejiga, urgency to tinkle, frequent micciones. The interstitial cystitis is a disease of vejiga urinary that has common symptoms to other diseases and is little well-known by the population and even by the doctors, therefore, at most of the patients the diagnosis arrives to them late, or never. It can affect both sexes but mainly one appears in young women. The characteristics of this chronic pathology cause that that suffers it they have difficulties to develop his life normally. "we know all the baths Rosary", relate accurately and treating about not losing the humor Alejandra Reviglione and Liliana Bacchi, to those who recently diagnosed the disease time to them (to see aside) after many years of anguish, to cross tens of specialists and to listen to the most dissimilar diagnoses. Although not yet it has cures and the treatments do not work in all the cases, once diagnosed exist therapeutic options that can alleviate the sintomatología. The urólogo Germa'n Chamas, said to the Capital, that the interstitial cystitis "is a chronic disease" that is fitted in which syndrome of pelviano pain is denominated and that the difficulty to diagnose it resides, on the one hand, in which it is a pathology not too frequent, and on the other hand, because the diagnosis is basically clinical. "there is no a specific study to say that a patient has the disease, not even the biopsy offers characteristic a fisiopatológico pattern to us", declares. In order to diagnose it the doctors symptoms and signs are used. "Between the problems that appear frequently in the interstitial cystitis they are the pain, the ardor and the slowness in vejiga. The patients usually refer annoyances, pinchazos. Also the frequent micciones, an urgent necessity to tinkle, and the full sensation of vejiga that does not disappear after happening through the bath. And although the symptoms are variable, in general all affirm that they have an annoying pain and incapacitante that it prevents to work with normality and to make the tasks daily ", it explains. The symptoms are tie to an important inflammation of vejiga but it is not known exactly what produces it. As those symptoms are looked like those of an urinary infection, he is not stranger who the patients are studied by this. "For surprise of many doctors, the patients have all the symptoms of an infection, but the urocultivos are negative", emphasizes Chamas. The frequent annoyances trastocan the daily life as much - there are people who usually go bathroom up to 60 times per day that the anguish and the depression usually is common between those who suffers it. To the pelvic pain and the interminable desire to go bathroom the impossibility is added to put full name to him to the problem, which causes uncertainty and until familiar conflicts because the tie people affectively to the patient begin to think that she does not have anything physical and she is a psychological problem. For worse, Chamas emphasizes that the symptoms usually get worse with stress. In addition, in the women, the menstruation exacerba the annoyances, like the sexual relations. Options of treatments the consulted urólogo affirms that the patients usually arrive at the diagnosis after many consultations to different specialists, among them the gynecologists. "to Them usually they request thousand studies and he does not appear nothing significant", clarifies. "we are speaking of a chronic disease of difficult diagnosis and treatment; the only specific medication is not cheap and few social works recognize it. There are other medicines that can give lightening but not always they are effective ", explains the urólogo. The patients with interstitial cystitis usually decide frequently on alternative medicines, like acupuncture or the homeopatía, with the purpose of improving their quality of life. Finally, Chamas indicates that in countries of the first world it is known enough more than in Argentina, and that exist associations that nuclean to the patients offering containment and advising. Even, it comments, that in addition to the access to all medicines free, occurs to the patients a card with which must right to pass first in the baths public. to send note by email Search outpost File Related notes peregrinating of three patients Copyright 2003 | All




I JUST WAN`T THAT YOU KNOW, THAT IN ARGENTINA, THERE ARE TWO PEOPLE THAT I KNOW, WHITH IC, AND SHE WENT TO A NEWSPAPER, WHITH ONE DOCTOR OF THEM, TO SPEAK OF IC, I THINK IS VERY IMPORTANT SPEAK IN RADIO IN TV OF THIS DISEASE.

[ICNDonna]

Thank you for sharing --- and for the translation.

Hugs,
Donna

[green_the_fish]

Thank you so much for posting this

I am an Argentinian; I moved to the States when I was a little kid. My grandma lives around Necochea right now, and she has a lot of symptoms of IC. Personally, based on what she has told my mother, I think that she does have IC. She has been having a hard time getting a diagnosis over there, though. Right now, I think some doctor got the idea into her head that it's psychosomatic, because she decided that her bladder symptoms are just caused by stress, and that they're not from any actual disease. I guess it's hard when you've had symptoms for 20 years and doctors do't have any answers for you.

[Angeles]

Gracias por el articulo! Thanks for the article!
I'm glad to know that in South America there's a publication in a newspaper about IC.
Id like to do the same thing when I go to Paraguay this year.
I'm sure there are a lot of people that suffer in silence without ever getting a diagnosis.

[glassd18]

Thank you for posting the article.

[manitu123]

Hola a todos!!
Mi nombre es Alejandra y soy de Rosario (argentina).
Es la primera vez que entro al foro y me ha gustado mucho.
Padezco ci desde hace unos 5 años.
Les dejo otra nota que se publicó el dia miércoles, 21 de noviembre de 2007.

Hello everyone!!!
My name is Alejandra and I´m from Rosario (argentina)
I´ve been suffering from ic for 5 years.
I´ve posted this newspaper article that was published on Wednesday 21th 2007.
My English is not perfect so I hope you understand my humble translation.

Cuando la angustia se vuelve lucha.
Alejandra Reviglione y Liliana Bacchi sufren una enfermedad rara, la cistitis intersticial, que se caracteriza por micciones continuas y dolorosas y afecta la calidad de vida. Hace un año se acercaron a La Capital para contar la odisea que vivían porque las obras sociales no les reconocen la medicación y porque, por desconocimiento, no se considera a la cistitis intersticial una enfermedad discapacitante.

   La nota publicada en agosto fue el puntapié para que tomara más impulso un sueño de Alejandra y Liliana: crear una asociación local para apoyar a otras personas y conseguir mejores condiciones en cuanto al diagnóstico y tratamiento. Hoy, la Asociación Rosarina de Cistitis Intersticial (Araci) es un hecho. El 7 de marzo obtuvieron la personería jurídica y ya se sumaron varios nuevos integrantes. Además, tienen una página web: www.araci.org.ar.

   Araci es además miembro de la Fundación Geiser. “Me di cuenta que sistematizando los esfuerzos —cuando nos toca vivir con una enfermedad rara— se puede cambiar el contexto”, confiesa Virginia Llera, presidenta de Geiser. Alejandra y Liliana, como tantos otros que luchan día a día en fundaciones y Ong´s, también lo saben.

When anguish turns into figth.
Alejandra Reviglione and Liliana Bacchi suffer from a rare disease, intersticial cystitis,which most common symtoms are frequent and painful urination and affects the cualtity of life. A year ago they came to LA CAPITAL to share with us all the trubble they had with the social security that doesn´t take care of the medication they need and to tell us that, as intersticial cystitis is unknown, it is not recognized as a disability.

The article published is August was the biginning to their dream to have a local IC asiciation to help other ic people to find better conditions as reguards tratments and diagnosis. Today the Cystitis Asociaction from Rosario (Araci) is a dream that came true. On 7th March the were given the legal status and now they have many new members. They also have a web page:www.araci.org.ar

Araci is also a member of Geiser Foundation, "I realized that join efforts-when we have to live with a rare disease-it is possible to change the context" said Virginia Llera, president of Geiser. Alejandra and Liliana, as many others that figth every day in asociations and Ong´s, also know that.

My e-mail es manitu123@hotmail.com

[Angeles]

Thanks Alejandra, I'm from S America too and neighboor country, but live in the US. It's good to hear abotu IC awareness especially in countries where it is a bigger challenge to find treatment and knowledgeable. I used to think think there couldn't possibly be anyone in S America with this condition, because I related it to the years when I was living there and never heard anything like that.

I'll email you so that we write each other in Spanish. Your English is very good, you did a great job translating the article and that's very much appreciated! Sometimes I think that there are women in the countries who are be suffering this condition and be completely misdiagnossed and that hurts me.
I want to do somethign about it and don't know how to start, from here! I'm coming from a family of doctors though so I asking one of them to publish somethign in a news paper could be a start.

[kadi]

Hola Diany,
¡Hace mucho tiempo que no nos hemos hablado! ¿Cómo has estado?
¿Y cómo está tu bebé?
Kadi

[manitu123]

Sorry!!!!!
I forgot to say that the new article written in the local newspaper (Diario La Capital de Rosario-Argentina) was also written by the same journalist:Florencia O´Keeffe, she is the one who opened us a big big door!!!! and we are always going to be very grateful!!!!!!!
Alejandra

Originally Posted by manitu123

Hola a todos!!
Mi nombre es Alejandra y soy de Rosario (argentina).
Es la primera vez que entro al foro y me ha gustado mucho.
Padezco ci desde hace unos 5 años.
Les dejo otra nota que se publicó el dia miércoles, 21 de noviembre de 2007.

Hello everyone!!!
My name is Alejandra and I´m from Rosario (argentina)
I´ve been suffering from ic for 5 years.
I´ve posted this newspaper article that was published on Wednesday 21th 2007.
My English is not perfect so I hope you understand my humble translation.

Cuando la angustia se vuelve lucha.
Alejandra Reviglione y Liliana Bacchi sufren una enfermedad rara, la cistitis intersticial, que se caracteriza por micciones continuas y dolorosas y afecta la calidad de vida. Hace un año se acercaron a La Capital para contar la odisea que vivían porque las obras sociales no les reconocen la medicación y porque, por desconocimiento, no se considera a la cistitis intersticial una enfermedad discapacitante.

   La nota publicada en agosto fue el puntapié para que tomara más impulso un sueño de Alejandra y Liliana: crear una asociación local para apoyar a otras personas y conseguir mejores condiciones en cuanto al diagnóstico y tratamiento. Hoy, la Asociación Rosarina de Cistitis Intersticial (Araci) es un hecho. El 7 de marzo obtuvieron la personería jurídica y ya se sumaron varios nuevos integrantes. Además, tienen una página web: www.araci.org.ar.

   Araci es además miembro de la Fundación Geiser. “Me di cuenta que sistematizando los esfuerzos —cuando nos toca vivir con una enfermedad rara— se puede cambiar el contexto”, confiesa Virginia Llera, presidenta de Geiser. Alejandra y Liliana, como tantos otros que luchan día a día en fundaciones y Ong´s, también lo saben.

When anguish turns into figth.
Alejandra Reviglione and Liliana Bacchi suffer from a rare disease, intersticial cystitis,which most common symtoms are frequent and painful urination and affects the cualtity of life. A year ago they came to LA CAPITAL to share with us all the trubble they had with the social security that doesn´t take care of the medication they need and to tell us that, as intersticial cystitis is unknown, it is not recognized as a disability.

The article published is August was the biginning to their dream to have a local IC asiciation to help other ic people to find better conditions as reguards tratments and diagnosis. Today the Cystitis Asociaction from Rosario (Araci) is a dream that came true. On 7th March the were given the legal status and now they have many new members. They also have a web page:www.araci.org.ar

Araci is also a member of Geiser Foundation, "I realized that join efforts-when we have to live with a rare disease-it is possible to change the context" said Virginia Llera, president of Geiser. Alejandra and Liliana, as many others that figth every day in asociations and Ong´s, also know that.

My e-mail es manitu123@hotmail.com