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Hello, my name is Francisco J. Castellanos. I am the ISN Support Group Leader for Bogotá, Colombia, the Asociación Colombiana de Esclerodermia (ASCLER).
I have had morphea scleroderma for about two years, and my diagnosis was confirmed by specialists almost one year ago. I have diverse skin plaques of different sizes. My dermatologist informed me that the type of morfea scleroderma that I have can be associated with lichen sclerosus et atrophicus.
When it was confirmed that I had scleroderma, I tried to seek help from a support group in my country, but surprisingly I did not find any. This motivated me to found ISN's Colombian Association (ASCLER), which provides help for patients with scleroderma and their families.
Our association has many diverse activities, including monthly meetings with members; workshops and conferences directed by medical specialists; and the Scleroderma Quality-of-Life Program (Programa Esclerodermia con Calidad de Vida). These activities are planned and developed with fundamental goals in mind: to better understand scleroderma and to improve quality of life for patients and their relatives.
My story is published in the wonderful book on scleroderma entitled Voices of Scleroderma, Volume 2. . The story appears in both Spanish and English. I have also written an article about our organization in Voices of Scleroderma Volume 3(in Spanish).
Feel free to send information to me (via email) regarding disease treatment, quality of life, and other subjects and diseases related to scleroderma. My email address is [email protected].
Patients belonging to the Colombian Association of ASCLER scleroderma, their families and caregivers, physicians who have participated in the activities and publications ASCLER, leaders of other associations and patient groups in different countries, student groups that have collaborated with the Association and the International Scleroderma Network wished to express his admiration and gratitude for the work of Francisco J. Castellanos for the past seven (7) years of direct benefit to people with scleroderma.
Francisco J. Castellanos, in addition to being Founder and President of the Association, has participated in numerous publications on scleroderma, authoring several articles about the disease, participated as co-author of books published by the International Scleroderma Network, author of brochures, Director of the Magazine, "Quality of Life with Scleroderma". In its effort to help patients, he has traveled to the cities of Cucuta, Barranquilla, Cali, Popayan, Pasto, Medellin, Villavicencio, Pereira, Manizales and Neiva, where he has visited the patients, clinics, anad medical specialists, bringing information, hope and help to many people.
Francisco has been a leader of the activities developed by the Colombian Association and he has dessiminated scleroderma information in various print media stations, TV channels and Internet. In 2010 he traveled to Buenos Aires (Argentina) and met with Ms. Nieves Bustos Cavilla, president of the Argentina Association of Scleroderma to share some experiences and ideas. That same year he participated actively in the First Latin American Symposium on Systemic Sclerosis in Bogota. In 2012 he participated in the Second Systemic Sclerosis World Congress in Madrid (Spain). On his return to Colombia has increased all the information he collected and documented this important academic event.
For all these achievements, for his perseverance, for his selfless assistance to other patients with scleroderma, for his leadership, today we pay homage and give all our sincere appreciation. On behalf of all Patient: Thank you Francisco! Posted 05/28/12.
Voices of Scleroderma Volume 3 has just been released, with 100 more new patient and caregiver stories! Contributing professionals include Dr. Marco Matucci-Cerinic and Dr. Irene Miniati (on Systemic Scleroderma), Dr. Fernanda Falcini (on Juvenile Scleroderma), Dr. Tafazzul e-Haque Mahmud, Dr. Laszlo Czirjak (on Scleroderma-Like Disorders), Francisco Castellanos, and Carol Langenfeld. Posted 01-24-06.
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