Daily Tribune, The Boston Globe, Associated Press, as well as almost

Daily Tribune, The Boston Globe, Associated Press, as well as almost all of the national women’s magazines including Ms. Magazine, Glamour, Working Woman, Redbook, Cosmopolitan, Mademoiselle, Self, Good Housekeeping, Woman’s Day, Ladies Home Journal , Family Circle, Prevention, Consumer Reports, Weight Watchers Magazine, and many others. Good Housekeeping, Self, Woman’s Day, and Cosmopolitan featured IC and the ICA on multiple occasions. The media was a critical component in the formation of the ICA. It was clear from the beginning that the media would be key to finding patients with IC, to increasing awareness among physicians and the public, and most importantly, legitimizing the disease. Once a story on IC was in print or a segment was aired on TV, patients identified themselves and were able to go to their doctors armed with information, and doctors were more likely to believe them. Both physicians and patients were educated by the media. Early on, the ICA began producing an excellent quarterly newsletter and brochures on key topics for patients and a separate newsletter for physicians. This kept them informed about the latest theories, research and treatments. Scientific journal articles soon followed. Fortunately, fax and cell phones became available in the mid 1980’s, followed by email and the Internet. This enabled the ICA to centralize communications, and allowed patients and physicians access to an enormous amount of information available on the ICA’s website, www.ichelp.org. We have all learned a great deal since 1984. Below are a few of the highlights: ?IC/bladder pain syndrome (BPS) can affect both men and women of all ages, including children and teenagers; ?It is not a psychosomatic disorder. In Campbell’s Urology (1978-1985), IC was included in the chapter entitled Psychosomatic Conditions in Urology. “Interstitial Cystitis may present the end stage in a bladder that has been made irritable by emotional disturbance…. a pathway for the discharge of unconscious hatreds.” (2). This was permanently omitted in the LDN193189 dose following editionpublished in 1986; ?IC is often accompanied by other medical conditions such IBS, chronic fatigue syndrome, CEP-37440 web vulvodynia (which did not have a name back in 1985), and endometriosis (3); ?Researchers have found no evidence to date that IC/PBS is caused by an infection; ?The average age of onset of this condition is 32-34 years old; ?There is a genetic component to this disease; ?Elmiron became the first FDA approved oral medication for use in IC in 1996. Techniques in pelvic floor therapy have advanced and are much more effective as a treatment; ?Techniques in pelvic floor therapy have advanced and are much more effective as a treatment; ?Dietary modifications are now better understood and play an increasingly important role; ?Epidemiology–see section on epidemiology. Despite great progress, it still takes some patients many years to obtain a diagnosis, only to find that no therapy available helps ease their symptoms. “Enclosed are three donations made in memory of my wife, Joanna…The extreme pain and despair over chances for a cure caused her to end her life on April 8th. We hope that these donations help in some small way to find a cure and save others from this fate.” (44 y/o female survived by her husband and teenage son). “I am an attorney for the Personal Representative of the estate of _____, and am writing to inform you of (her death).” (43 y/o female who committed suicide due to IC, and d.Daily Tribune, The Boston Globe, Associated Press, as well as almost all of the national women’s magazines including Ms. Magazine, Glamour, Working Woman, Redbook, Cosmopolitan, Mademoiselle, Self, Good Housekeeping, Woman’s Day, Ladies Home Journal , Family Circle, Prevention, Consumer Reports, Weight Watchers Magazine, and many others. Good Housekeeping, Self, Woman’s Day, and Cosmopolitan featured IC and the ICA on multiple occasions. The media was a critical component in the formation of the ICA. It was clear from the beginning that the media would be key to finding patients with IC, to increasing awareness among physicians and the public, and most importantly, legitimizing the disease. Once a story on IC was in print or a segment was aired on TV, patients identified themselves and were able to go to their doctors armed with information, and doctors were more likely to believe them. Both physicians and patients were educated by the media. Early on, the ICA began producing an excellent quarterly newsletter and brochures on key topics for patients and a separate newsletter for physicians. This kept them informed about the latest theories, research and treatments. Scientific journal articles soon followed. Fortunately, fax and cell phones became available in the mid 1980’s, followed by email and the Internet. This enabled the ICA to centralize communications, and allowed patients and physicians access to an enormous amount of information available on the ICA’s website, www.ichelp.org. We have all learned a great deal since 1984. Below are a few of the highlights: ?IC/bladder pain syndrome (BPS) can affect both men and women of all ages, including children and teenagers; ?It is not a psychosomatic disorder. In Campbell’s Urology (1978-1985), IC was included in the chapter entitled Psychosomatic Conditions in Urology. “Interstitial Cystitis may present the end stage in a bladder that has been made irritable by emotional disturbance…. a pathway for the discharge of unconscious hatreds.” (2). This was permanently omitted in the following editionpublished in 1986; ?IC is often accompanied by other medical conditions such IBS, chronic fatigue syndrome, vulvodynia (which did not have a name back in 1985), and endometriosis (3); ?Researchers have found no evidence to date that IC/PBS is caused by an infection; ?The average age of onset of this condition is 32-34 years old; ?There is a genetic component to this disease; ?Elmiron became the first FDA approved oral medication for use in IC in 1996. Techniques in pelvic floor therapy have advanced and are much more effective as a treatment; ?Techniques in pelvic floor therapy have advanced and are much more effective as a treatment; ?Dietary modifications are now better understood and play an increasingly important role; ?Epidemiology–see section on epidemiology. Despite great progress, it still takes some patients many years to obtain a diagnosis, only to find that no therapy available helps ease their symptoms. “Enclosed are three donations made in memory of my wife, Joanna…The extreme pain and despair over chances for a cure caused her to end her life on April 8th. We hope that these donations help in some small way to find a cure and save others from this fate.” (44 y/o female survived by her husband and teenage son). “I am an attorney for the Personal Representative of the estate of _____, and am writing to inform you of (her death).” (43 y/o female who committed suicide due to IC, and d.