Visit to EMA, Argentina

In August 2007, Susana traveled to Buenos Aires, Argentina, to spend a week with the country’s national MS society.

Susana spent much of the week at EMA’s day centre in Palermo Viejo, Buenos Aires. On her first visit she met the Chief Executive, Inés Acevedo, and was welcomed by social assistant Elena Garós, psychologist Debora Fleschler and psychiatrist Dr Cristian Gil Mariño.

Susana took part in the activities and workshops held at the centre, attended by people with MS, their relatives and caregivers. She particularly enjoyed the speech and music therapy workshops and felt that the Literature Workshop could be replicated by EMUR. She also helped with the sewing of one of the flags for the EMA Maratón Solidaria (Marathon for Solidarity) one of the society’s most important annual fundraising events that was to take place a few days later.

On Tuesday 28 August Susana took part in the programme EMA Sale a los Barrios, where society representatives visit other areas of the city to talk to people about MS and raise awareness of their work. On this occasion they spent the day in Caseros promoting the forthcoming Marathon.

Her visit also included spending two days at the Instituto de Neurociencias Buenos Aires (INEBA) founded by Dr Leonor Gold in 2003.

On the Sunday she participated in the Maratón Solidaria, Susana is pictured at the event with Inés Acevedo (below).

Susana’s work and dedication as a caregiver has attracted a lot of media attention over the year, including a television interview in November. En route to visiting EMA she met a reporter from Colonia, Uruguay who interviewed her about her voluntary work, the work of EMUR and life with MS for her daughter.

The interview was originally published in the weekly Uruguayan paper El Eco. It can also be read online on the Uruguayan Neurological Society website.

2007 was not only a busy year for Susana but also for Lorena. Lorena represented Uruguay in Bocce at the Special Olympics World Summer Games in Shanghai, China, and came away with two gold medals. The First Lady of Uruguay, Maria Auxiliadora Delgado de Vazquez, a Board member of the Special Olympics Committee in Uruguay, got to know Lorena and Susana personally and the publicity that Lorena's success received drew more public attention to the disease.

"The effect of the award has helped people with MS as much as the credibility of the cause of MS in our country, and we do not feel like a small boat floating alone in the middle of the ocean, but more like a small boat being carried by a big steamer called MSIF.”
EMUR Representative

The winning nomination, in both English and Spanish, is below:

Susana Carballido Perdigón

Susana is an outstanding woman with four children. Her youngest daughter, Lorena, was diagnosed with MS aged 15, in January 1999.

Since that day, “Dame Susana”, as we like to call her, has climbed a high mountain, and since EMUR was founded she has been there to help.

Before Lorena was diagnosed with MS, Susana herself had been diagnosed with Lupus Erythematosus, and tells us she was quite a depressed person. But once she had to “fight” for her daughter, she forgot about her condition.

In 2005, she volunteered to help the neurologists working with MS patients at the University Hospital. In 2006 she took the hospital’s official Volunteers Course and was admitted as a "Dama Rosada" (Ladies in Pink) of the institution. She works two afternoons a week with in-patients and on Wednesday mornings with the neurologists of the Demyelinating Diseases Section of the Institute of Neurology, The State University of Uruguay.

When working within the MS section of the hospital, she started wearing a turquoise uniform, with a big identification that said “MS Volunteer”, so that all the 17 floors of the hospital started to become aware of MS. Everywhere she went she took EMUR’s brochure with her and always taught people about MS and about EMUR.

Susana’s commitment and love for all the people diagnosed with MS and their families spread widely in the hospital and in the MS association. Many of those newly diagnosed started calling her “mom Susana” and for many people with MS she is like a caring and loving mother as well as a friend and counsellor to their caregivers and relatives. She says that she likes being the mother of her children as well as of all the people with MS that need a loving mother-like person to care about them.

Nowadays, Susana is the perfect assistant of the neurologists of the MS section of the hospital providing relatives and/or caregivers with her wise advice, her affection, her optimism, her knowledge of the paths to be taken in the hospital as well as the bureaucratic paperwork outside the hospital. She talks with them about their doubts, their fears, or their everyday life concerns, as a loving friend would do.

Susana is there the day of the diagnosis, the day after, and every day from then on. Her telephone is always ringing, and her serenity, her love, her optimism and her sensitivity, are always there to help. She transmits positive energy not only to the people with MS and to their families but also to the other volunteers that work with her in the hospital and in EMUR.

From the beginning, she got involved with our recently founded MS association – EMUR. She was one of the five delegates to the Health Committee of the Uruguayan Parliament that successfully brought the cause of MS to the government authorities’ attention in November 2005. This meeting resulted in:

• The disease being taken into account in the country’s General Budget Law for the first time in the history of MS in Uruguay. MS was assigned a small amount of money for the five years of the recently elected Government. This sum can be increased in the following annual budgets.



• Susana’s daughter, Lorena, was finally authorized by the University Hospital to start immune-modulator treatment with Interferon-beta in December 2005, and it has proved to be a wise decision. Lorena’s treatment was the first to be authorised in this public hospital (the country’s principal hospital in the diagnosis and treatment of so many health conditions).

Susana Carballido Perdigón

Susana es una mujer que se destaca. Es madre de cuatro hijos, y a su hija más joven, Lorena, le fue diagnosticada Esclerosis Múltiple (EM) a los 15 años, en enero de 1999.

Desde ese día, "la Dama Susana", como nos gusta llamarla, ha subido una montaña muy alta y desde que la asociación EMUR fuera fundada, ella ha estado allí para ayudar.

Antes de que Lorena fuera diagnosticada con Esclerosis Múltiple, la propia Susana había sido diagnosticada con Lupus Eritematoso, y ella nos relata que era una persona bastante depresiva. Pero una vez que ella tuvo que luchar por su hija, ella se olvidó de su condición.

En 2005, ella se ofreció como voluntaria para ayudar a los neurólogos que trabajan con los pacientes de Esclerosis Múltiple en el Hospital Universitario de Montevideo. En el año 2006 ella tomó el curso oficial de los Voluntarios del Hospital de Clínicas, donde fue admitida como "Dama Rosada" (las señoras de las túnicas color rosa) de la institución. Ella trabaja dos tardes por semana con los pacientes internados y los miércoles por la mañana trabaja con los neurólogos de la Policlínica de Enfermedades Desmielinizantes del Instituto de Neurología de la Facultad de Medicina de la Universidad de la República Oriental de Uruguay.

Al trabajar dentro de la sección de Esclerosis Múltiple del hospital, ella empezó llevando un uniforme turquesa con una identificación grande que decía "Voluntaria de Esclerosis Múltiple", para que todos los 17 pisos del hospital empezaran a conocer la Esclerosis Múltiple. A todos lados a donde iba ella llevaba un folleto con información de EMUR y de la Esclerosis Múltiple, y siempre les explicaba a las personas sobre EMUR y sobre la Esclerosis Múltiple.

El compromiso de Susana y el cariño que brinda a todas las personas diagnosticadas con Esclerosis Múltiple y a sus familias es ampliamente conocido tanto en el hospital como en la asociación de EM. Muchas de las personas recién diagnosticadas comenzaron a llamarla "mamá Susana" y para muchas personas con EM ella es como una madre cariñosa y preocupada así como una amiga y consejera para sus familiares y acompañantes. Ella dice que le gusta ser la madre de sus hijos pero también de aquellas personas con diagnóstico de EM que necesitan a alguien que les brinde el cariño de una madre y que se preocupe por ellos.

En la actualidad, Susana es una competente ayuda para los Neurólogos que trabajan en la Policlínica de Esclerosis Múltiple del Hospital, y al mismo tiempo, acompaña a las personas que allí concurren y tienen diagnóstico de EM, así como a sus familiares y/o acompañantes. Lo hace con afectuoso interés y optimismo, aconsejándoles y ayudándolos para la realización de los trámites diversos, consultas con otros especialistas, estudios y formularios que necesiten hacer dentro y fuera del Hospital. Ellos también dialogan con Susana sobre sus dudas, sus temores o sus preocupaciones cotidianas, como lo harían con una amiga cariñosa.

Susana está allí el día del diagnóstico, el día después y cada día que sigue. Su teléfono está siempre sonando, y su serenidad, su cariño, su optimismo y su sensibilidad están siempre ahí para ayudar. Ella transmite energía positiva no solamente a las personas con EM y a sus familiares sino también a los otros voluntarios que trabajan con ella en el hospital y en EMUR.

Desde el principio, ella se involucró con nuestra asociación de EM recientemente fundada -EMUR-. Ella fue una de las cinco delegadas al Comité de Salud del Parlamento uruguayo que con éxito atrajo la atención de las autoridades gubernamentales a la causa de la EM en Noviembre del año 2005. A raíz de esta entrevista, resultó que:

• La Esclerosis Múltiple fue tenida en cuenta en la Ley de Presupuesto General del país por primera vez en la historia del Uruguay. Se le asignó a EMUR una cantidad de dinero para los cinco años del Gobierno recientemente elegido. Esta suma puede aumentarse en los presupuestos anuales siguientes.



• La hija de Susana, Lorena, fue autorizada finalmente por el Hospital de Clínicas para comenzar el tratamiento inmunomodulador (con
  Interferón-beta) en diciembre de 2005, y ha demostrado ser una decisión acertada. El tratamiento de Lorena fue el primero en ser autorizado en este hospital público, que es el centro de referencia en nuestro país en el diagnóstico y tratamiento de tantas enfermedades.

2007 Nominations

The judges of the award would like to express their thanks, admiration and support to all the nominees, all of whom receive an MSIF certificate acknowledging their nomination.

• Yvonne and Peter Lockwood, Australia
• Robin Rankine, Canada
• Denmark
• Sarah Parke, Ireland
• Evelyn Veisten, Norway
• Antonia Martín de Vidales, Spain