Basic Statistics and Findings on DES Sons

DES Sons International Network 5-Year Summary Statistics: First Findings on DES Sons Participating in the DES Sons International Network Between 1999 and 2004

Scott Kerlin, 5-Year Research Summary Update, October 2004

1. In the five years since formation of the DES Sons Network in July 1999, approximately 600 individuals have requested more information or support through e-mail follow-up requests and/or requests to join the Network. This is over and above all information that is freely available for visitors to the Network’s website which provides substantial information and resources on DES without subscription. Because the DES Sons International Network does not maintain statistics on total Internet traffic to its website, there is no accurate method to gauge how many other affected individuals may be utilizing this information.
2. Of those 600 individuals who have sought further DES information, approximately 500 are 46XY males who indicated at the time of my initial Network subscription screening that they had either strong suspicions (based on evidence from family members) or actual confirmation (from mother, or direct access to medical records) that they had been exposed to DES in utero. These 500 individuals with confirmed or likely prenatal DES exposure have been members of the network sometime between 1999 and 2004. For this reason I consider our study’s base sample size to have attained a total of 500 DES sons as of spring 2004.
3. The vast majority of individuals whom I have allowed to join the Network had either “confirmed” (i.e. directly through medical records access or indirectly through personal conversation with mother) or “strongly suspected” (i.e. all evidence points in that direction, but medical records access and/or contact with mother not possible) prenatal DES exposure. However, a few (less than 50 altogether since the Network was formed) who had no way of confirming their exposure also were permitted to join in order to assist them with unanswered questions.
4. Based on responses between 1999 and 2004 to Network surveys, responses from individual online or telephone interviews, and follow-up discussions with DES sons members, the three areas of greatest health concern among DES sons in the DES sons’ network appear to be
   1. hormonal/endocrine health issues;
   2. gender identity and sexual health issues;
   3. and psychological/mental health issues including anxiety and depression.
5. Somewhat lower proportions of members indicated concerns regarding autoimmune disorders, infertility, reproductive tract abnormalities, ambiguous or underdeveloped genitalia, epididymal cysts, testicular cancer, and erectile dysfunction. Because not every individual member has necessarily disclosed the full range of health issues or medical concerns by which he or she has been affected, the relative significance of reported health concerns among DES sons in this research study is an approximation, based on rigorous qualitative analysis of information which has freely volunteered by network members.
6. Despite exhaustive efforts to clarify the history of health issues experienced by DES sons, it appears that only a small number of DES sons contacting our Network have suffered from any type of cancer-related health problems (primarily testicular cancer during younger years). The Network continues to raise awareness among members regarding potential cancer risks. These efforts include participation in the annual prostate cancer awareness month activities of the National Cancer Institute and membership subscription to monthly online alerts from the International Society for Men’s Health and Gender (ISMH). Despite my numerous inquiries, no case of prostate cancer has been disclosed by network members as of July 2004.

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MORE DES DIETHYLSTILBESTROL RESOURCES

• Other studies on DES and gender identity.
• Diethylstilbestrol DES studies by topics.