The Riddle of Gender - Deborah Rudacille [144]
“For a very long time, we’ve been battling with the forces that would try to keep the DES radar screen narrowly focused on cancer and, in particular, on vaginal and cervical cancer alone,” says social scientist Scott Kerlin. A DES son, Kerlin founded DES Sons Network in 1999, an online support and advocacy group for the XY children exposed to DES in utero. For years, Kerlin has been fighting the perception that DES is a women’s health issue. “Compared with research on DES daughters, there is a paucity of published research studies and public awareness focusing directly on the health effects of DES sons. The reasons for this remain at question, although evidence points in part to a history of inadequate commitment to male reproductive and sexual health issues by the DES-exposed victims advocacy groups which first called for public investigation about the effects of DES in the 1970s. It is also quite possible that the level of public awareness and U.S. governmental funding for further DES research was kept deliberately narrow (i.e., focusing on “known” effects such as vaginal cancer), and other areas of potential health effects were simply not addressed by public health funding agencies.”
Kerlin says that the latest round of research and educational materials produced by the U.S. Centers for Disease Control will not change the perception that DES is primarily a women’s health concern. “I’ve gotten advance looks at the CDC materials and it goes without saying, sons’ issues are really being neglected. It seems that this is the biggest obstacle we are facing; DES is not just about increased cancer risk or infertility, but our ‘advocates’ would never want you to know that.” Kerlin himself suffers from hypogonadism, or testosterone deficiency. Hypogonadism is one of the “unproven” effects of DES in exposed males, though animal research has shown that DES exposure causes imbalances in fetal hormone levels and impairment of normal functioning in hormone receptors. Other structural effects of exposure to DES and other estrogenic chemicals in males include epididymal (tes-ticular) cysts; hypoplastic (small) testicles; undescended testicles, or cryptorchidism; microphallus (abnormally small penis); and testicular varicoceles (irregularly swollen veins on the testicle). These enlarged veins produce a higher-than-normal temperature in the testicles and can, over years, lower sperm count, resulting in sub-fertility Hypospa-dias, a condition in which the opening of the penis is located on the underside rather than at the tip; and urethral meatal stenosis, a narrowing of the opening of the penis, have also been noted in DES sons. Gy-necomastia, enlargement of the male breast, has been noted not only in DES sons but also in adult male agricultural workers exposed to the chemical.
Scott Kerlin stumbled onto another potential outcome of DES exposure in sons when his DES Information Network was a few months old. Kerlin had created the online discussion group to fill the need for “greater interconnectedness” and communication among DES sons. Mothers and daughters had being doing so for years, online and at meetings. DES sons, by contrast, were a mostly silent, mostly invisible group. By creating a forum for the men to discuss their concerns, Ker-lin hoped to prod the DES advocacy groups and government funding agencies to recognize the wide range of health effects experienced by sons and the lack of attention to their needs. “The DES Sons Online Network was also formed to expand awareness about the range of existing research about