Debería
notificar anticipadamente que este articulo es extenso, que quién tenga el
interés de leerme piense en aceptar una pausa, quizás café de por medio o tal
vez sentado en su espacio favorito y permitirse por un momento pensar y
enfocarse en otros temas. No
soy escritora ni nada parecido, ésto es solo el gusto por comunicar y de seguro
ese es el elemento impulsor que me lleva a querer atrapar en este lugar que se
encuentra entre el anonimato y la exposición, las reflexiones que me significan
importantes.
El camino por las Enfermedad Intestinales Inflamatorias
(Enfermedad de Crohn y Colitis Ulcerosa) me significo ir traspasando diferentes
puertas y de cada una de ellas salí enriquecida y más fuerte. No
puedo recordar un solo día en donde no haya aprendido algo y he tropezado con
todo tipo de bondades y bajezas humanas. Conocí el amor por el
prójimo, el agradecimiento, la lealtad, la lucha, la generosidad, la
honestidad, la bondad absoluta, el respeto y el cariño profundo. En esta
travesía me cruce con personas que me enseñaron a mirar la vida y la profesión
de un modo que jamás hubiera planificado. Ha sido una bendición haber podido
entender, valorar e interpretar todo lo que la vida me puso delante. Estas
personas han sido familia, pacientes, colegas, amigos, compañeros y
hasta desconocidos que mutaron a inseparables
conocidos.
También choque contra intereses, egos, corrupción,
abuso de poder, falta de ética, conveniencias, soberbia, envidias, hipocresías,
ingratitud, traición y colisioné de manera brutal contra la mentira. Es
así, como acaricié el lado más iluminado y bendecido y por el otro el lado
más oscuro de una profesión noble como debería ser la medicina.
Con el
tiempo pude entender el porque tantas cosas simples se hacían complejas.
Experimentar ambos extremos y su matices intermedios es parte de la formación
de los cimientos de muchos logros que llegaron con el tiempo luego de extensa
siembra y fue necesario para mi crecimiento personal. Lo cierto es que no
imagine que jamás dejaría de sorprenderme y que tantas cosas me faltaban
aprender. En el últimos años he conocido personas
maravillosas, dignas de admirar y copiar y que demuestran que vale la pena este
mundo pese a todo lo que uno lee en la actualidad de cada país. Esas personas
llevan años en una lucha: la Discapacidad.
Estas
personas son anónimas, tienen casi inexistentes espacios en los medios de
comunicación porque no practican el glamour de la superficialidad, estas
personas hacen del mundo algo mejor cada día pero no se muestran en la TV
porque quizás no es "cool".
Hay una parte de
personas en el mundo actual, que parece importarle las fotos intimas filtradas
con absoluta intención de una mujer que se gano la fama con escándalos baratos
o vistiéndose con prendas que permitan mostrar con orgullo el cuerpo pasado por
el hambre y la restricción alimentaria. A un grupo de personas, parece
interesarle si una persona mitad plástico y mitad carne humana compró un
vestido al valor de un vehículo en Argentina, si un futbolista cambio la
ocasional novia o el color de la nueva cartera que compró una descabellada
devenida a señora cazadora de hombres con buen pasar.
Pero
afortunadamente, hay otra parte de personas en el mundo actual a la que nada de
eso le importa. Esas personas nos reafirman que los valores no se han perdido y
que hay esperanza. Esas personas se brindan al prójimo de un modo del que me
quedo sin palabras a diario. Puedo decir que yo conocí a la
mujer del año y que yo conocí a verdaderos ídolos. Muchos de ellos sin grandes
apariencias pero con una integridad y calidad humana imposible de cuantificar.
Son grandes maestros y a mi entender verdaderos ídolos.
En el tema de la
discapacidad he aprendido mucho y me avergüenzo de no haber sabido ni lo más básico
por tanto tiempo. Pero esta sociedad no nos prepara, esta sociedad dual en
donde se habla de inclusión y luego se obstruye una rampa, en donde estando
frente a una persona no vidente el que sí ve es el ciego. Esta sociedad
contradictoria en donde mucha gente cree que ser solidario es juntar ropa que
nos sobra o ir a misa, que sin desmerecer es importante, pero luego comete todo
tipo de infracciones para sobrepasarnos en una rotonda colapsada por su inepta
evolución siendo incapaz de brindar fluidez en horarios calientes.No estamos
preparados como sociedad a reaccionar ante una persona con
dificultades físicas motoras, sensoriales, viscerales o intelectuales,
porque si no nos toca en primera persona es un tema de los otros.
Estas conductas que llevamos como ciudadanos solo crea o perpetúa
barreras de todo tinte e intensidad que edifican el cerco de la discapacidad. Sabemos como asistir a una persona no vidente en la vía pública? Yo no lo
supe durante mucho tiempo y gracias a ellos lo aprendí. Como reaccionamos
cuando un desconocido hipoacúsico está cerca nuestro? La lista de
preguntas podría ser extensa y en todo no sabríamos que decir. Yo
misma no supe responderlas por muchos años de mi vida.
Me pregunto si la discapacidad visceral es la mas discriminada de
la discapacidades. Ella tal vez sea la mas afortunada o la menos considerada
dentro de este círculo. En discapacidad visceral, cuesta entender y aceptar que una
persona pueda presentar una discordancia entre lo que se ve por fuera y como se
siente físicamente y lo que le condiciona aquello que sucede en su abdomen, sea
proveniente de su intestino o de sus riñones. Es difícil explicar como puede alguien verse con aparente salud y
padecer una enfermedad que lo limite en las cosas mas sencillas de la vida
cotidiana.
Para quien se piensa ajeno a estos temas vale preguntarse por un
momento que es la discapacidad. Estando en este nuevo mundo de una temática en
la que fui una completa ignorante por tantos años he podido hacer mi propia
definición. La discapacidad no existiría si los seres humanos no pusiéramos
enormes barreras. Sin barrera no hay discapacidad. Los obstáculos que a diario
las personas ponemos frente a otras personas hacen que la otra se tropiece con
una incapacidad.
La sociedad se prepara para la generalidad, los semáforos solo se
piensan para el grupo de personas que pueden ver, las veredas no se preparan
para que circule un bastón blanco, muletas o una silla de rueda, sabiendo que
existe una legislación al respecto que solo parecen seguir los bancos y las
rampas se obstruyen con autos estacionados por personas sin respeto.
Estudiar no es una acción que pueda ejecutar todo aquel que desee.
Quien no ve o no escucha tendrá limitaciones y discapacidad solo porque no se
pensó en él cuando se organizo la estructura edilicia, el plantel docente y las
herramientas o elementos educativos. Si esas personas hubieran estado
incluidas en esta construcción educativa tendrían discapacidad?
Y entre tanto que aprendí, pude saber que existían
personas que aparentando salud, tenían imposibilidad de controlar las urgencias
defecatorias. En un tema tan pudoroso y que como un latigazo pasa a la burla,
ellos optan por ocultar su enfermedad, pasan a recluirse presentando todo tipo
de excusas y pierden mucho mas de lo que creemos. Yo jamás había pensando que
muchísimas de estas personas habían tenido ensuciamientos en condiciones
públicas y la sorpresa fue saber que eran tantos!
Por ello
iniciamos un trabajo que condujo a la legislación de un derecho a "no
poder esperar". Bien recibido en su mayoría, poco difundido
en los medios porque quizás "vende poco", no reproducido por muchos
quizás porque no tuvieron la autoría del empuje inicial y también recibido de
modo cruel por otros minoritarios. Al pie de este artículo les dejo nuestra
respuesta. Más allá de todo, mi reflexión es que si debemos legislar
para garantizar un derecho básico en una persona de la sociedad significa que
algo fallo antes. Y lo vería de este modo, el numero de leyes es directamente
proporcional al numero de barreras que estas personas tiene
impuestas. Celebro que existan países en donde no se deban
crear innumerables leyes para cuidar los derechos básicos de un
ciudadano. Aunque no parezca seguimos viendo en esta sociedad al
homo sapiens, esa especie de primate que debía haber evolucionado. Para finalizar les dejo la respuesta que hemos tenido hacia quién no supo
entender al prójimo y seguramente piensa que estará de por vida ajeno a
todo tipo de necesidad y vulnerabilidad.
COMUNICADO OFICIAL DESDE FUNDECCU
ARGENTINA A LAS PALABRAS PRONUNCIADAS POR SERGIO ANDRES HERRERO. Repudio a
los comentarios vertidos desde la ignorancia.FUNDECCU ARGENTINA (Fundación
Argentina de Ayuda para las personas con Enfermedad de Crohn y Colitis
Ulcerosa)
En mi carácter de presidenta de la Fundación Argentina de Ayuda
para las personas con Enfermedad de Crohn y Colitis Ulcerosa) escribo esta
carta en función de los desafortunados comentarios iniciados por el Sr Sergio
Andres Herrero; Presidente Barrio Nuestras Malvinas, San Carlos de Bariloche,
Argentina.
En su significado preciso, Ignorancia (del latín ignorantĭa) es la falta de
conocimientos en particular o de cultura en general. La persona que ignora algo
no lo conoce o no lo comprende. El ignorante puede ser respetuoso y tener un
sentido de la humanidad que permita compensar su desconocimiento y aprender lo
que no sabía. También el ignorante puede saber pedir disculpas ante los
errores.
El comúnmente llamado “Colon Irritable” es una Enfermedad de los movimientos
del intestino, absolutamente benigna aunque altere la calidad de vida de las
personas que la padecen. Puede cursar con diarrea crónica o todo lo contrario,
con constipación. Nadie se muere de colon irritable, nadie se opera, ni nadie a
consecuencia de esto aumenta el riesgo de padecer cáncer de colon en el
futuro.De igual modo, nadie que se llame persona de bien se burlaría de alguien
que no pueda evacuar sus intestinos ni por el contrario que tenga diarreas.La
Enfermedad de Crohn y la Colitis Ulcerosa son enfermedades de origen genético y
autoinmune (es decir que el propio cuerpo lastima al intestino en este caso) en
donde grandes ulceras se producen en el interior de órgano y ocasiona diarrea
con sangre, adelgazamientos extremos, dolores articulares. Las personas pueden
necesitar con frecuencia internarse para calmar la actividad de la enfermedad,
medicación costosa de por vida, alguna veces ser operadas de urgencias y tienen
mayor riesgo de padecer cáncer de colon en el tiempo, por lo cual deben ser
controladas con colonoscopias con cierta regularidad.Estas personas son
mayormente adolescentes (entre 14 y 15 años) aunque también niños pequeños,
adultos o ancianos también pueden padecerla.En Argentina no hay estadísticas
pero solo en Neuquén hay 600 personas que la padecen.El 80% de los enfermos no
sale de su casa por miedo a “NO PODER ESPERAR”, por ello pierden los empleos,
pierden años de estudios (2 años en promedio), pierden su vida social. Del 20%
que se anima a arriesgarse a salir, la mitad no pudo contener su necesidad de
ir al baño y se ensucio completamente en la calle, en un banco, haciendo algún
trámite, en la escuela frente a sus compañeros, en sus trabajos, en un cine, en
un colectivo, en un supermercado. Durante mucho tiempo ocultan su enfermedad
justamente por ignorantes, como el que inicia esta burla hacia ellos. Hay
muchos de estos personajes sociales que hacen más difícil la vida de las
personas.Quien padece esta dolencia y quien convive con ellos, sabe muy bien el
daño que comentarios y apreciaciones de este tipo hacen a esta población de
seres humanos que un día se levantó con dolor abdominal y mancho completamente
su inodoro con sangre. Que hubiera sentido usted?Yo misma no tengo esta
enfermedad, pero siento una profunda autoridad para hablar de este modo porque
sí convivo día a día con todos ellos hace más de 16 años cuando elegí trabajar
para ellos, luchar por ellos y ayudarlos. Por lo tanto, los tristes y
decadentes comentarios de usted señor y de muchos que se han sumado cruelmente,
los asumo y siento dirigidos hacia mi persona también.Elegí ser su voz, elegí
poner mi profesión, mi tiempo personal, mis esfuerzos al servicio de todos
ellos, devolviendo lo que la Facultad Publica de mi país me brindo y por ello
que soy yo quién le responde en nombre de todos.No estamos vinculados a ningún
partido político, sino que todos los partidos políticos de Neuquén se unieron,
escuchando las necesidades de estas personas. Eso fue algo rescatable en este
país del cual tanto nos quejamos siempre. Ninguno de ellos pidió nada a cambio,
solo recibieron nuestro pedido, escucharon a los enfermos y levantaron la mano
conmovidos por los fuertes testimonios del día a día de personas que por fuera
parecen sanas pero que padecen una Discapacidad Visceral, ya que esto produce
esta dolencia.Le hablo a esa persona que con tanta liviandad, soberbia,
ignorancia y mala intención se burló de estos enfermos utilizando términos en
chistes chabacanos como “cagar” y “caca”.Apreciado Señor: la caca la saca usted
por el mismo lado que todos los seres humanos, pero quizás, en los sitios que
la buena gente no la tiene usted sí. Sería cuestión de que demuestre que no es
así, se retracte y pida las disculpas correspondientes a todos estos los que
ofendió.
Seguramente buscaba herir, difamar o quien sabe que, a su oponente político, ya
que basta mirar un poco de usted para darse cuenta a que se dedica.
Nosotros no somos obsecuentes con nadie porque solo trabajamos para la salud de
personas que sufren, pero si agradecemos a quien se ocupe de legislar por los
derechos de todos los que lo necesiten, porque para eso ocupan los bancos que
ocupan, ya que nosotros mismos los ponemos allí.
Sería bueno que sepa que hay madres y padres que tienen hijos enfermos de 15
años y que se hicieron encima como un bebe frente a todo sus compañeros del
colegio y que luego no quisieron ir más a estudiar perdiendo sus ciclos
lectivos. Esos padres estuvieron horas sentados esperando que sus hijos salgan
de su cirugía, ellos lloraron en mis hombros y por eso yo le respondo a usted.
Y que haría si fuera su hijo?
Sería bueno que sepa que mujeres jóvenes de 40 años se han ensuciado
completamente dentro de un supermercado sin poder siquiera evitarlo. Y sabe
qué? No solo “caca” como usted menciona, sino sangre. Que tremendo no? Que
haría si fuera su esposa?
Sería bueno que sepa que hubo señores de 50 años que no aguantaron tampoco en
un micro cuando justamente venían a verme a mí a la consulta médica. Quizás
sentados podrían haber llegado limpios. Y sabe qué? Yo los ayude a limpiarse y
yo contuve el llanto tremendo luego de semejante evento que humilla a
cualquiera. Que haría si fuera usted?
Sería bueno que sepa que mujeres de 20 años, por las cuales más de uno se da
vuelta para volverlas a ver, ya que para esta sociedad delgadez es sinónimo de
belleza, se ensuciaron integrante en plena calle, ya que al pasar por un bar
con los segundos contados le dicen que el baño es para clientes o para quien
consuma. Lógicamente que su delgadez no era cuidado estético sino falta de
salud. Qué haría si fuera su hermana?
Alguna vez tuvo que asistir y consolar a una persona que paso por este terrible
momento en donde la vergüenza, el dolor, la desesperación y humillación no
pueden ser peores? Yo si lo hice y más de una vez. Por eso se lo explico.
Entonces señor: en su carácter de presidente de la unidad vecinal del Barrio
Nuestras Malvinas de nuestra queridísima Cuidad de San Carlos de Bariloche,
ocupe con el doble de conciencia y respeto el lugar que le cabe. Sea
inteligente, piense con prudencia lo que va a expresar, escuche y asesórese
profundamente y más que cualquier integrante de la sociedad antes de expresarse
como un miembro del “bar de los Simpsons”, sea humano y responsable antes de
dar este tipo de comunicados que pueden afectar y lastimar a personas
vulnerables y ya golpeadas por una enfermedad que los obliga a tener una vida
atada a medicamentos, estudios y miedos.
Que la necesidad de atacar a un colega de su oposición política no nuble su
juicio, que la rivalidad que ocasionan las ideologías diversas no le hagan dar
estos malos pasos que muy mal lo definen a usted mismo.
Celebremos que alguien y no importa quien, haya escuchado y llevado adelante
este proyecto, el cual nosotros desde Fundeccu Argentina ayudamos a generar
apoyándolos, ya que marcamos el precedente en todo América. Solo Australia
tiene esta legislación en vigencia y hoy estamos ayudando a muchos países de
Latinoamérica a lograrlo. Es un orgullo que esto se produzca en Argentina, mal
que a usted le pese porque quizás a su color político no se le ocurrió.
Usted sabe acaso que quien llevo la idea al Consejo Deliberante de Bariloche
fue la mama de una mujer de 36 años con enfermedad de Crohn? Y que quien puso a
disposición los organismos gubernamentales para que hoy sea una ordenanza solo
hizo su trabajo? Y esa mamá tuvo a su hija más de una vez al borde de una
incertidumbre de no saber si podría sobrevivir. Y hoy, necesita no humillarse
frente a la comunidad haciéndose encima.
Cuidado, prudencia, respeto al pronunciarse respecto de personas enfermas.
Decir que algo no es una prioridad porque a uno no lo afecta no es una buena
perspectiva para ver el mundo y emitir juicios como si fueran verdades
absolutas. Las prioridades surgen de la necesidad y para esta gente el baño es
una prioridad, el no ensuciarse en condiciones públicas es el 100% de su
prioridad ni bien abren los ojos cada mañana y es bueno que se aprenda a la
legislar para la minoría en tal caso. Ya que implica que no se busca el voto
sino la resolución de una problemática. Habla de solidaridad y humanidad.
Si nosotros nos equivocamos y la “caca” no está en las partes que comandan su
razón y juicio, sería bueno que lo demuestre retractándose y disculpándose con
todas las personas que padecen Enfermedad de Crohn y Colitis Ulcerosa, de su
provincia primero, de su país en segundo lugar y del mundo finalmente. Si bien
eso está en duda por muchos, debido a que no ha dado la cara en todos los
comentarios que los afectados hicieron en las redes sociales.
Dra Fabiana Miele
Médica Especialista en Gastroenterología
Presidente de Fundeccu
Argentina www.fundeccu.com.ar
My journey through the Intestinal Inflammatory Diseases and Disability
I should warn you that this post is extense so, if you're interested in reading it should perhaps stop from time to time, drink some coffee between paragraphs and maybe sit in your favorite spot to think and ponder a little. I'm not a writter or anything like it, this is just for the pleasure of communicating.
My path through the IID (Intestinal Inflammatory Diseases - Crohn's Disease and Ulcerative Colitis) meant going throught different doors and, after each of them, I got through them stronger and richer (not in the money sense, of course). I can't remember a day where I didn't learn something and I've overcome lots of boundaries and human obstacles. I met the love for others, gratitude, loyalty, struggle, generosity, honesty, absolute goodness, respect and deep affection. In this journey I came across people who taught me to look at life and the profession in a way that had ever planned. It has been a blessing to have been able to understand, evaluate and interpret everything that life put me ahead. These people are family, patients, colleagues, friends, colleagues and even strangers who mutated into inseparable known. I also bumped into intesrests, egos, corruption, abuse of poder, lack of ethics, convinience, pride, envy, ungratitude, betrayal and I brutally crashed against lies. That was how I caressed the blessed and brighter side and a darker one on the other side of a noble profession as medicine is. Eventually I could understand why so many simple things became complex. Experiencing both ends and intermediate shades is part of the formation of the foundations of many achievements that came with time and after extensive planting were necessary for my personal growth. In these last years I've met wonderful people, worth admiring and copying as they prove that this world is worth everything one reads about it. Those people have been fighting for years. They're been struggling something: Disability. These people are anonymous, have almost no space in the media because they don't practice the glamor of superficiality. These people make the world better every day but don't show themselves on TV because maybe it's not "cool". There is a part of people in today's world, that seem to mind the intimate photos leaked with absolute intention of a woman fame with cheap scandals or getting dressed in clothes that permit proudly show last body by hunger and food restriction win . A group of people seems to be interested if a person half plastic and half human flesh bought a dress to the value of a vehicle in Argentina, if a player change the occasional wedding or the color of the new portfolio that bought a wild-turned to jacket lady men with good pass. But luckily, there are other people in the actual world who don't care about any of that. Those people affirm values aren't lost and that there's hope. I can say I met the woman of the year and I've met real idols. Many of them with no great appearances but integrity and human quality. They're great teachers and mi real heroes. On the issue of disability I learned a lot and I am ashamed not to have known nor the basics for so long. But this society does not prepare us, this dual society where talk of inclusion and then a ramp, where being in front of a blind person who does see is the cecum becomes blocked. This contradictory society where many people believe to be supportive is to collect clothes left over us or go to church, without detracting is important, but then commits all kinds of offenses to overwhelm us in a roundabout collapsed by its inept evolution being unable to provide fluidity in hot times. We are not prepared as a society to react to a person with motor, sensory, visceral, physical or intellectual difficulties, because if we do not play in the first person is a subject of others. These behaviors that we as citizens only creates or perpetuates barriers of all dye and intensity that build the encirclement of disability. Do we know how to attend a non-sighted person in the street? I did not know for a long time and thanks to them I learned. How we react when a hearing impaired stranger is near us? The list of questions could be extensive and all would know that not say. I myself did not know answer for many years of my life. I wonder if the visceral disability is the most discriminated one. She may be the luckiest or less considered within this circle. In visceral disability, difficult to understand and accept that a person can file a discordance between what is outside and how you feel physically and what determines what happens in your abdomen, either from your gut or your kidneys. It is difficult to explain how someone can be with apparent health and suffering from a disease that limit in the simplest things of everyday life. For those who think foreign to these issues worth asking for a moment that is disability. Being in this new world, a theme that was a complete ignorant for so many years I could make my own definition. Disability does not exist if humans did not put huge barriers. Unfenced no disability. Daily obstacles that people put in front of other people do the other tripped over a disability. Society is prepared for the generality, traffic lights are only intended for the group of people who can see, the sidewalks are not prepared to circulate a white cane, crutches or a wheelchair, knowing that there is legislation in place that only seem to follow the banks and ramps are clogged with cars parked by people without respect. Studying is not an action anyone can run if that person just wishes to. Who does not see or hear will have limitations and disability just because it was not thought of him when the building structure is organized, the teaching staff and educational tools or elements. If those people had been included in this educational building have disabilities? And as I learned, I could know that there were people that feigning health, were impossible to control in bowel emergencies. In such a prudish and like a whip passes mockery, they choose to hide their illness issue, pass reclusive presenting all kinds of excuses and lose much more than we think. I had never thought that many of these people had defilements in public conditions and the surprise was to know that there were so many! Thus began a work that led to the legislation of a right "not to wait." Praised mostly little publicized in the media because perhaps "sell short" not reproduced by many perhaps because they had no responsibility for the initial push and also received cruelly by other minority. At the bottom of this article I leave our response. Beyond all, my thought is that if we legislate to ensure a basic right of a person in society means that something went wrong before. And it would thus the number of laws is directly proportional to the number of barriers they have imposed. I am pleased that there are countries which are not due creating countless laws to care for the basic rights of a citizen. This may not seem we continue to see in this society to homo sapiens, the species of primate that should have evolved. Finally I leave the answer to whom failed to understand others and will surely think of vicarious life to every need and vulnerability.
OFICIAL NOTICE FROM FUNDECCU ARGENTINE TO THE PRONNOUNCED WORDS BY SERGIO ANDRES HERRERORepudiating the comments made from ignorance.FUNDECCU ARGENTINA (Argentina Foundation Help for people with Crohn's Disease and Ulcerative Colitis).In my capacity as president of the Argentina Foundation Help for people with Crohn's Disease and Ulcerative Colitis) I write this letter in terms of the unfortunate comments initiated by Mr Sergio Andres Herrero; Our president Barrio Malvinas, San Carlos de Bariloche, Argentina.In its precise meaning, ignorance (Latin ignorantia) is the lack of knowledge in particular or culture in general. The person who ignores something does not know or does not understand. The ignorant can be respectful and have a sense of humanity to compensate their ignorance and learn what they did not know. Also the ignorant may know apologize for our mistakes.The commonly called "Irritable Bowel" is a disease of the bowel movements, although quite benign alter the quality of life of people who suffer. It may present with chronic diarrhea or the opposite, with constipation. Nobody dies of irritable bowel syndrome, nobody opera, no one as a result of this increases the risk of colon cancer in the future.Similarly, no one good person make fun of someone who can not evacuate their bowels or on the contrary you have diarrhea is called.Crohn's disease and ulcerative colitis are diseases of genetic and autoimmune origin (ie the body itself injures the intestine in this case) where large ulcers occur inside the body and causes bloody diarrhea, extreme thinning, aches joint. People may need frequently penetrate to calm the activity of disease, costly medication for life, some times be operated emergency and have increased risk of colon cancer in time, so they must be controlled with colonoscopies with some regularity.These people are mostly adolescents (between 14 and 15 years old) although small children, adults and old people can also be included. In Argentina there are no statistics but only in Neuquen there are 600 people who have it.80% of patients not leave his house for fear of "could not wait", so they lose jobs, lose years of study (2 years on average), they lose their social life. 20% who are encouraged to venture out, half could not contain his need to go to the toilet and completely mess on the street, on a bench, doing some processing, at school against their peers, in their work, in a theater, on a bus, in a supermarket. For a long time hiding their illness just as ignorant as the one who initiates this mockery to them. There are many of these social characters that make life more difficult for people.Who suffers from this ailment and who lives with them, knows very well the damage that comments and assessments of this type make this human population rose one day with abdominal pain and completely mancho your toilet with blood. You have felt?I myself do not have this disease, but I feel a profound authority to speak in this way just because I live every day with all of them over 16 years ago when I chose to work for them, fight for them and help them. Therefore, the sad and decadent comments you sir and many who have joined cruelly, the feel and assume directed towards me too.I chose to be his voice, I chose to put my profession, my personal time, my efforts to serve all of them, returning what the Post School of my country gave me and why am I who replied on behalf of all.We are not tied to any political party, but all political parties joined Neuquen, listening to the needs of these people. That was something salvageable in this country which we always complain much. None of them asked for nothing in return, just received our order, listened to the sick and raised their hands shaken by strong testimonies of everyday life of people who outwardly appear healthy but suffering from Visceral Disabilities, as this produces this ailment .I talk to that person so lightly, arrogance, ignorance and misconduct he mocked these patients using terms tacky jokes like "shit" and "poop".Dear Lord, you take the poop on the same side that all human beings, but perhaps, in places that good people do not have you do. It would be a matter of showing that it is not, retract and ask the appropriate apologies to all those who offended.Surely sought injure, defame or who knows that his political opponent, because just look at some of you to realize it is dedicated.We are not obsequious with anyone because we only work to the health of people suffering, but thank who deal legislate for the rights of all who need it, because that occupy the banks they occupy, since we ourselves we put there.It would be nice to know that there are parents who have sick children of 15 years and made up like a baby in front of all his classmates and then refused to go to study losing their school cycles. Those parents spent hours sitting waiting for their children leave their surgery, they cried on my shoulders and so I answer to you. And it would if it were your child?It would be nice to know that young women of 40 years have completely messed up inside a supermarket without even being able to avoid it. And you know what? Not just "poop" as you mention, but blood. Not that tremendous? I'd do if his wife?It would be nice to know that there were men of 50 years also not endured in a micro when just came to see me to the doctor. Perhaps sitting could have come clean. And you know what? I help them cleaned and I held back tears after such a tremendous event that humiliates anyone. I'd do if you were?It would be nice to know that women aged 20 years, of which more than one turn to make them to see, because for this thinness society is synonymous with beauty, member got dirty in the street because passing through a bar the seconds counted tell you that the bathroom is for customers or for those who consume. Logically that thinness was not aesthetic but lack health care. What would if your sister?Ever he had to go and comfort a person passing through this terrible moment where shame, pain, despair and humiliation can not be worse? I if I did and more than once. So I explain.Then Sir, in his capacity as president of the neighborhood unit Barrio Nuestras Malvinas our beloved City of San Carlos de Bariloche, occupy twice as awareness and respect the place that fits you. Be smart, think wisely what to express, listen deeply and more than any member of society before expressed as a member of the "bar Simpsons" is human and responsible take advice before taking this type of communications that can affect and hurt vulnerable and already hit by a disease that forces them to have a millstone to medicines, studies and fears life.The need to attack a colleague of his political opposition does not cloud your judgment, that the rivalry that cause the various ideologies do not you give these missteps badly define yourself.We celebrate someone and no matter who has heard and carried out this project, which we from Argentina Fundeccu help generate support them, and we set the precedent throughout America. Only Australia has legislation in force and today we are helping many countries in Latin America to achieve. It is a pride that this occurs in Argentina, bad that you would because maybe despite their political color not happened.You know perhaps that whoever took the idea to the City Council of Bariloche was the mother of a 36 year old woman with Crohn's disease? And who made available to government agencies today is an ordinance just did his job? And that mom had her daughter more than once on the brink of uncertainty of not knowing whether he could survive. And today, you need not humble himself before making up the community.Care, prudence, respect for the rule on sick people.To say that something is not a priority because one does not affect it's not a good perspective to see the world and make judgments as if they were absolute truths. The priorities arise from the need and for these people the bathroom is a priority, not become dirty in public conditions is 100% of their priority as soon as you open your eyes every morning and it is good to learn to legislate for the minority in such case. Since it implies that the vote but the resolution of a problem is not looking. He speaks of solidarity and humanity.If we were wrong and "poop" is not in the parts that command his reason and judgment, would be good to show backtracking and apologizing to all people with Crohn's Disease and Ulcerative Colitis, his province first, his country second and finally the world. While that is questioned by many because it has not given his face in all affected comments made on social networks.
Dra Fabiana Miele
Medic - Specialist in GastroenterologyFundeccu Argentina Presidentwww.fundeccu.com.ar
I should warn you that this post is extense so, if you're interested in reading it should perhaps stop from time to time, drink some coffee between paragraphs and maybe sit in your favorite spot to think and ponder a little. I'm not a writter or anything like it, this is just for the pleasure of communicating.
My path through the IID (Intestinal Inflammatory Diseases - Crohn's Disease and Ulcerative Colitis) meant going throught different doors and, after each of them, I got through them stronger and richer (not in the money sense, of course). I can't remember a day where I didn't learn something and I've overcome lots of boundaries and human obstacles. I met the love for others, gratitude, loyalty, struggle, generosity, honesty, absolute goodness, respect and deep affection. In this journey I came across people who taught me to look at life and the profession in a way that had ever planned. It has been a blessing to have been able to understand, evaluate and interpret everything that life put me ahead. These people are family, patients, colleagues, friends, colleagues and even strangers who mutated into inseparable known. I also bumped into intesrests, egos, corruption, abuse of poder, lack of ethics, convinience, pride, envy, ungratitude, betrayal and I brutally crashed against lies. That was how I caressed the blessed and brighter side and a darker one on the other side of a noble profession as medicine is. Eventually I could understand why so many simple things became complex. Experiencing both ends and intermediate shades is part of the formation of the foundations of many achievements that came with time and after extensive planting were necessary for my personal growth. In these last years I've met wonderful people, worth admiring and copying as they prove that this world is worth everything one reads about it. Those people have been fighting for years. They're been struggling something: Disability. These people are anonymous, have almost no space in the media because they don't practice the glamor of superficiality. These people make the world better every day but don't show themselves on TV because maybe it's not "cool". There is a part of people in today's world, that seem to mind the intimate photos leaked with absolute intention of a woman fame with cheap scandals or getting dressed in clothes that permit proudly show last body by hunger and food restriction win . A group of people seems to be interested if a person half plastic and half human flesh bought a dress to the value of a vehicle in Argentina, if a player change the occasional wedding or the color of the new portfolio that bought a wild-turned to jacket lady men with good pass. But luckily, there are other people in the actual world who don't care about any of that. Those people affirm values aren't lost and that there's hope. I can say I met the woman of the year and I've met real idols. Many of them with no great appearances but integrity and human quality. They're great teachers and mi real heroes. On the issue of disability I learned a lot and I am ashamed not to have known nor the basics for so long. But this society does not prepare us, this dual society where talk of inclusion and then a ramp, where being in front of a blind person who does see is the cecum becomes blocked. This contradictory society where many people believe to be supportive is to collect clothes left over us or go to church, without detracting is important, but then commits all kinds of offenses to overwhelm us in a roundabout collapsed by its inept evolution being unable to provide fluidity in hot times. We are not prepared as a society to react to a person with motor, sensory, visceral, physical or intellectual difficulties, because if we do not play in the first person is a subject of others. These behaviors that we as citizens only creates or perpetuates barriers of all dye and intensity that build the encirclement of disability. Do we know how to attend a non-sighted person in the street? I did not know for a long time and thanks to them I learned. How we react when a hearing impaired stranger is near us? The list of questions could be extensive and all would know that not say. I myself did not know answer for many years of my life. I wonder if the visceral disability is the most discriminated one. She may be the luckiest or less considered within this circle. In visceral disability, difficult to understand and accept that a person can file a discordance between what is outside and how you feel physically and what determines what happens in your abdomen, either from your gut or your kidneys. It is difficult to explain how someone can be with apparent health and suffering from a disease that limit in the simplest things of everyday life. For those who think foreign to these issues worth asking for a moment that is disability. Being in this new world, a theme that was a complete ignorant for so many years I could make my own definition. Disability does not exist if humans did not put huge barriers. Unfenced no disability. Daily obstacles that people put in front of other people do the other tripped over a disability. Society is prepared for the generality, traffic lights are only intended for the group of people who can see, the sidewalks are not prepared to circulate a white cane, crutches or a wheelchair, knowing that there is legislation in place that only seem to follow the banks and ramps are clogged with cars parked by people without respect. Studying is not an action anyone can run if that person just wishes to. Who does not see or hear will have limitations and disability just because it was not thought of him when the building structure is organized, the teaching staff and educational tools or elements. If those people had been included in this educational building have disabilities? And as I learned, I could know that there were people that feigning health, were impossible to control in bowel emergencies. In such a prudish and like a whip passes mockery, they choose to hide their illness issue, pass reclusive presenting all kinds of excuses and lose much more than we think. I had never thought that many of these people had defilements in public conditions and the surprise was to know that there were so many! Thus began a work that led to the legislation of a right "not to wait." Praised mostly little publicized in the media because perhaps "sell short" not reproduced by many perhaps because they had no responsibility for the initial push and also received cruelly by other minority. At the bottom of this article I leave our response. Beyond all, my thought is that if we legislate to ensure a basic right of a person in society means that something went wrong before. And it would thus the number of laws is directly proportional to the number of barriers they have imposed. I am pleased that there are countries which are not due creating countless laws to care for the basic rights of a citizen. This may not seem we continue to see in this society to homo sapiens, the species of primate that should have evolved. Finally I leave the answer to whom failed to understand others and will surely think of vicarious life to every need and vulnerability.
OFICIAL NOTICE FROM FUNDECCU ARGENTINE TO THE PRONNOUNCED WORDS BY SERGIO ANDRES HERRERORepudiating the comments made from ignorance.FUNDECCU ARGENTINA (Argentina Foundation Help for people with Crohn's Disease and Ulcerative Colitis).In my capacity as president of the Argentina Foundation Help for people with Crohn's Disease and Ulcerative Colitis) I write this letter in terms of the unfortunate comments initiated by Mr Sergio Andres Herrero; Our president Barrio Malvinas, San Carlos de Bariloche, Argentina.In its precise meaning, ignorance (Latin ignorantia) is the lack of knowledge in particular or culture in general. The person who ignores something does not know or does not understand. The ignorant can be respectful and have a sense of humanity to compensate their ignorance and learn what they did not know. Also the ignorant may know apologize for our mistakes.The commonly called "Irritable Bowel" is a disease of the bowel movements, although quite benign alter the quality of life of people who suffer. It may present with chronic diarrhea or the opposite, with constipation. Nobody dies of irritable bowel syndrome, nobody opera, no one as a result of this increases the risk of colon cancer in the future.Similarly, no one good person make fun of someone who can not evacuate their bowels or on the contrary you have diarrhea is called.Crohn's disease and ulcerative colitis are diseases of genetic and autoimmune origin (ie the body itself injures the intestine in this case) where large ulcers occur inside the body and causes bloody diarrhea, extreme thinning, aches joint. People may need frequently penetrate to calm the activity of disease, costly medication for life, some times be operated emergency and have increased risk of colon cancer in time, so they must be controlled with colonoscopies with some regularity.These people are mostly adolescents (between 14 and 15 years old) although small children, adults and old people can also be included. In Argentina there are no statistics but only in Neuquen there are 600 people who have it.80% of patients not leave his house for fear of "could not wait", so they lose jobs, lose years of study (2 years on average), they lose their social life. 20% who are encouraged to venture out, half could not contain his need to go to the toilet and completely mess on the street, on a bench, doing some processing, at school against their peers, in their work, in a theater, on a bus, in a supermarket. For a long time hiding their illness just as ignorant as the one who initiates this mockery to them. There are many of these social characters that make life more difficult for people.Who suffers from this ailment and who lives with them, knows very well the damage that comments and assessments of this type make this human population rose one day with abdominal pain and completely mancho your toilet with blood. You have felt?I myself do not have this disease, but I feel a profound authority to speak in this way just because I live every day with all of them over 16 years ago when I chose to work for them, fight for them and help them. Therefore, the sad and decadent comments you sir and many who have joined cruelly, the feel and assume directed towards me too.I chose to be his voice, I chose to put my profession, my personal time, my efforts to serve all of them, returning what the Post School of my country gave me and why am I who replied on behalf of all.We are not tied to any political party, but all political parties joined Neuquen, listening to the needs of these people. That was something salvageable in this country which we always complain much. None of them asked for nothing in return, just received our order, listened to the sick and raised their hands shaken by strong testimonies of everyday life of people who outwardly appear healthy but suffering from Visceral Disabilities, as this produces this ailment .I talk to that person so lightly, arrogance, ignorance and misconduct he mocked these patients using terms tacky jokes like "shit" and "poop".Dear Lord, you take the poop on the same side that all human beings, but perhaps, in places that good people do not have you do. It would be a matter of showing that it is not, retract and ask the appropriate apologies to all those who offended.Surely sought injure, defame or who knows that his political opponent, because just look at some of you to realize it is dedicated.We are not obsequious with anyone because we only work to the health of people suffering, but thank who deal legislate for the rights of all who need it, because that occupy the banks they occupy, since we ourselves we put there.It would be nice to know that there are parents who have sick children of 15 years and made up like a baby in front of all his classmates and then refused to go to study losing their school cycles. Those parents spent hours sitting waiting for their children leave their surgery, they cried on my shoulders and so I answer to you. And it would if it were your child?It would be nice to know that young women of 40 years have completely messed up inside a supermarket without even being able to avoid it. And you know what? Not just "poop" as you mention, but blood. Not that tremendous? I'd do if his wife?It would be nice to know that there were men of 50 years also not endured in a micro when just came to see me to the doctor. Perhaps sitting could have come clean. And you know what? I help them cleaned and I held back tears after such a tremendous event that humiliates anyone. I'd do if you were?It would be nice to know that women aged 20 years, of which more than one turn to make them to see, because for this thinness society is synonymous with beauty, member got dirty in the street because passing through a bar the seconds counted tell you that the bathroom is for customers or for those who consume. Logically that thinness was not aesthetic but lack health care. What would if your sister?Ever he had to go and comfort a person passing through this terrible moment where shame, pain, despair and humiliation can not be worse? I if I did and more than once. So I explain.Then Sir, in his capacity as president of the neighborhood unit Barrio Nuestras Malvinas our beloved City of San Carlos de Bariloche, occupy twice as awareness and respect the place that fits you. Be smart, think wisely what to express, listen deeply and more than any member of society before expressed as a member of the "bar Simpsons" is human and responsible take advice before taking this type of communications that can affect and hurt vulnerable and already hit by a disease that forces them to have a millstone to medicines, studies and fears life.The need to attack a colleague of his political opposition does not cloud your judgment, that the rivalry that cause the various ideologies do not you give these missteps badly define yourself.We celebrate someone and no matter who has heard and carried out this project, which we from Argentina Fundeccu help generate support them, and we set the precedent throughout America. Only Australia has legislation in force and today we are helping many countries in Latin America to achieve. It is a pride that this occurs in Argentina, bad that you would because maybe despite their political color not happened.You know perhaps that whoever took the idea to the City Council of Bariloche was the mother of a 36 year old woman with Crohn's disease? And who made available to government agencies today is an ordinance just did his job? And that mom had her daughter more than once on the brink of uncertainty of not knowing whether he could survive. And today, you need not humble himself before making up the community.Care, prudence, respect for the rule on sick people.To say that something is not a priority because one does not affect it's not a good perspective to see the world and make judgments as if they were absolute truths. The priorities arise from the need and for these people the bathroom is a priority, not become dirty in public conditions is 100% of their priority as soon as you open your eyes every morning and it is good to learn to legislate for the minority in such case. Since it implies that the vote but the resolution of a problem is not looking. He speaks of solidarity and humanity.If we were wrong and "poop" is not in the parts that command his reason and judgment, would be good to show backtracking and apologizing to all people with Crohn's Disease and Ulcerative Colitis, his province first, his country second and finally the world. While that is questioned by many because it has not given his face in all affected comments made on social networks.
Dra Fabiana Miele
Medic - Specialist in GastroenterologyFundeccu Argentina Presidentwww.fundeccu.com.ar
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