Offspring of a DES Daughter or a DES Son
ARE YOU A DES GRANDDAUGHTER OR DES GRANDSON?
You may not be able to tell. Hopefully, your parents told you about DES being part of your family health history. If so, they deserve credit because it is not an easy discussion to have.
What might make you suspect DES exposure? If your mom mentioned having problems such as difficulty getting pregnant, miscarriages or reproductive tract cancers. Or, if there was any family discussion about a drug given to your grandmother while she was pregnant. Then you may be a DES Grandchild and should pay attention to that possibility.
Unfortunately, it is nearly impossible these days to obtain medical records from past years, so that avenue of confirmation may not be available to you.
WHAT IS THE CONCERN
Mice are recognized as good predictors of the human experience. When mice are given DES at the time of development, the resulting health problems in their offspring mirror those seen in human DES Daughters and DES Sons. When their offspring, the DES Grandchildren mice, exhibited health problems, researchers raised a warning flag.
Scientists are taking what they learned from animal studies to investigate whether a drug given to their grandmothers has affected human DES Grandchildren. As study results come in, there is growing evidence that the DES Grandchild generation has been adversely impacted. How that could happen is explained in an excellent article about transgenerational epigenetics published in Mother Jones magazine. The last paragraph addresses the DES experience. As described, toxic exposures don’t actually mutate DNA, but rather they alter how specific genes turn themselves off and on to do the work they are supposed to do in the body. If not activated properly, because of exposure to DES in a previous generation, then health problems may develop.
WHAT RESEARCH TELLS US ABOUT DES GRANDCHILDREN
- Delayed Menstruation Regularity
DES Granddaughters participating in the long-running National Cancer Institute (NCI) DES Follow-up Study reported menstruation starting at about the same age as unexposed women. But it took longer for DES Granddaughters to achieve regular menstrual periods, meaning a period is predictable within five days. This small study also hints at the possibility that infertility may be more frequent in DES Granddaughters. But researchers stress that further studies are needed. Read a review of this research in the DES Action VOICE newsletter.
Studies done in both the Netherlands and France indicate that male children of DES Daughters may be at greater risk for this birth defect than unexposed individuals. Hypospadias is a condition where the urethral opening on the penis is in the wrong place, emerging somewhere down the shaft instead of at the tip. In many cases hypospadias can be corrected with surgery. Of note is that other studies have failed to replicate this finding. An article in the DES Action VOICE newsletter has background information.
- Tumor Growth
Animal studies indicate a higher rate of tumor growth in DES Grandson and Granddaughter mice compared with unexposed animals. The study was reviewed in the DES Action VOICE newsletter.
But researchers caution that more studies are needed to prove conclusively that this finding in DES-exposed mice also occurs in humans. This is being closely watched.
- Overall Cancer Risk
Human studies of DES Grandchildren, at this time, find no overall increased cancer risk for DES Grandchildren.
- However, research done as part of the National Cancer Institute DES Follow-up Study found the number of ovarian cancers among DES Granddaughters greater than expected. This finding supports the need for further study and health monitoring of DES Grandchildren.
- No increases in testicular cancer were found for DES Grandsons, nor were there any cases of vaginal/cervical clear cell adenocarcinoma (CCA) among DES Granddaughters. CCA is the cancer for DES Daughters that is linked to prenatal DES exposure. Additional information is in a story in the DES Action VOICE newsletter.
TELL YOUR DOCTOR
Findings from studies of DES Grandchildren are just beginning so doctors may not have heard of them. Tell your doctor of your DES exposure and that you would like to discuss it further in subsequent visits. Note your exposure on the intake form or request that your doctor do so on your chart.
Currently, there are no special health screenings identified for DES Grandchildren.
It is best to stay aware, not overly concerned but rather informed as research continues into DES Grandchild medical issues.