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DES Action PublicationsDES Action publishes a newsletter twice a year for its members and other targeted groups and individuals. There is an information leaflet available which is funded and produced by the Health Promotion Unit of the Department of Health and posters from the same source. A detailed booklet for confirmed DES daughters is available on request. Audited annual accounts are also available
Newsletter - Autumn 2009Elizabeth A. Camp, et al, Journal of Lower Genital Tract Disease, Volume 12, Number 2, 2008. Reviewed by Kari Christianson Reproduced by permission of VOICE, DES ACTION USA Summer 2008 Do DES Daughters have more Pap smears and gynaecological screening exams than unexposed women? Are DES Daughters following gynaecological screening recommendations? Do DES Daughters go to the doctor for general health screening more often? To answer these questions Elizabeth Camp, MSPH, from the School of Public Health, University of Texas Health Science Center, and her colleagues with the National Cancer Institute (NCI) DES Follow-up Study analysed responses of 3,140 DES-exposed women and 826 unexposed women from the 1994 questionnaire. Annual gynaecological exams for DES Daughters were recommended by the Department of Health, Education and Welfare in 1978, the NCI in 1980 and the American College of Obstetricians and Gynecologists in 1994. This recommendation includes all DES Daughters, whether or not they have experienced structural or tissue changes. Additionally, the screening is to begin at age 14, four earlier than unexposed women. So, what are the results of this analysis? Let’s start with the gynaecological visits. “Among women without a reported history of CIN (cervical intraepithelial neoplasms which are abnormal growths of precancerous cells), DES-exposed women were more likely than unexposed women to exceed recommendations for Pap smears, whereas among women with a history of CIN, this was not observed.” The researchers present the possibility that women with a history of DES exposure, but who have not had CIN, are aware of their increased risks for abnormal tissue changes, which influences frequent exams. DES Daughters with a history of CIN followed but did not exceed screening recommendations. Additionally, “among all women, DES exposure was not associated with receiving more general visits.” This study found that the history of chronic diseases among DES-exposed and unexposed women was exactly the same at 28%. (Chronic disease includes a diagnosis of diseases such as: lupus, scleroderma, rheumatoid arthritis, multiple sclerosis, chronic ulcerative colitis, diabetes, thryoiditis, hyperthryoidism, anemia, asthma, and chronic fatigue syndrome.) The mean age of the unexposed women was 40 years. Most perplexing is the finding that 29% of DES Daughters were not following the recommendations for screening and had not received annual Pap exams in the past five years. This finding even included DES-exposed women with a history of precancerous cervical cell growth. “I am surprised to learn that so many DES Daughters reported not getting their annual pelvic screenings as they should. My hope is that in the years since the questionnaire more DES-exposed women have heard the warnings and are taking them seriously, “ says DES Action Co-Founder Pat Cody. “ DES Daughters have a life-long risk for vaginal and cervical cancer so they must be vigilant about being screened for it every year,” she adds. A follow-up analysis using more recent data to compare and contrast results is planned. Researcher Camp joins Cody in hoping the numbers show an increase on the percent of DES Daughters receiving their annual screenings. Camp acknowledges that access to health care and insurance status may be involved in this noncompliance for recommended gynaecological screening. And she recommends that future educational efforts should be directed at encouraging the exposed population to comply with the recommended screening exam. One thought she puts forth is the possibility that “periodic reminders from the offices of attending gynecologists may increase the number of annual visits.” As reported frequently in the VOICE, an annual gynaecological screening exam is still the standard of care for a DES Daughter. To find a specific description of the DES screening exam and the annual recommendations, please visit our web site at www.desaction.org.
DES (diethylstilbestrol) is a synthetic form of the female hormone oestrogen. (In Ireland and the UK, it is better known as stilboestrol). From 1938 to the 1970s, several million women worldwide were prescribed DES if they had a previous history of miscarriage, if they were bleeding in pregnancy or if they were diabetic. DES was given in pill form and by injection and sold by over 200 drug companies, under their own brand names as well as in the generic form, stilboestrol. DES exposure can lead to health problems:
I have chosen the leading article for this edition because I suspect that the same results would have arisen if the analysis had been carried out in Ireland. Notwithstanding the fact that the research was done in the US, DES Daughters everywhere have the same essential needs with regard to their health care. It is no less important now than it was in the past for DES Daughters to be screened annually. The changes in the way that DES Daughters are reviewed at the National Maternity Hospital does not affect the need to be reviewed. We strongly urge all DES Daughters to make appointments for their annual visits to Dr. Myra Fitzpatrick at the Gynaecology/Colcoscopy Clinic at the hospital. If you encounter any difficulties in making your appointment, Sister Jenny Fitzgerald is the person to speak to and she will help you. We held our AGM on July 1st last, thanks are due to Frank Egan for the use of his offices. As usual, the attendance was low but this may be a reflection of the lack of importance DES exposure plays in the daily lives of our DES population; this surely is a good thing. Aislinn reported on our activities during the year, especially the success of our Table Quiz. She paid tribute to Dr. Mary Wingfield who has moved on within the NMH. She thanked her for the care and concern she has shown to the many DES Daughters who attended the DES clinic over almost twenty years. We discussed various ways in which we might remember Colette and we will follow up on this. Daphne Passmore, Editor.
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BooksYou may find the books listed below to be of value. The books can be ordered online from Amazon. If ordered via the links below, a small commission will be paid to DES Action Ireland.
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