WHAT IS THE CONCERN:
When mice are given DES at the time of development, the resulting offspring health problems mirror those seen in human DES Daughters and Sons.
Mice are recognized as good predictors of the human experience. So, when the children of these mice, the DES Grandchildren mice, developed problems, researchers raised a warning flag.
Scientists are now investigating whether human DES Grandchildren have been affected by a drug given to their grandmothers. As study results come in, there is growing evidence that this generation has been adversely impacted. Here is an excellent explanation of how scientists now believe health problems are passed from one generation to the next. It is not a mutation of DNA itself, but rather a change in how genes turn themselves on and off to do the work they are supposed to do in the body. If not activated properly, because of exposure to DES by a forebear, then health problems arise. See specific reference to DES in the final paragraph.
WHAT WE KNOW ABOUT DES GRANDCHILDREN:
Delayed Menstruation Regularity – DES Granddaughters participating in the long-running National Cancer Institute 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 the researchers are quick to point out that further studies are needed.
Hypospadias – Studies done in both the Netherlands and Franceindicate 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 penis 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. Read more.
Tumor Growth – Animal studies indicate a higher rate of tumor growth in DES Grandson and Granddaughter mice than in unexposed animals. But researchers caution that more studies are needed to prove conclusively that this finding in DES-exposed mice also occurs in humans.
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 report supports further study and health monitoring of DES Grandchildren.
- No increase in testicular cancer was found for DES Grandsons, nor were there any cases of vaginal/cervical clear cell adenocarcinomas (CCA) among DES Granddaughters. CCA is the cancer DES Daughters (your mothers) should be checked for every year.
National Cancer Institute DES Fact Sheet provides an up to date rundown of health impacts for those in the DES community. See bullet 7 for DES Grandchild information.
WHAT TO TELL YOUR DOCTOR :
Studies of DES Grandchildren are just getting underway and some 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.
Pay attention to new DES Grandchild research results you can read about in the VOICE newsletter by becoming a member of DES Action USA.
Currently, there are no special health screenings identified for DES Grandchildren.
LITIGATION IN DES GRANDCHILD CASES
Attorney Aaron Levine and Associates has successfully argued cases involving the premature birth of DES Grandchildren due to their mother's defective uteruses caused by DES exposure. Read more in the DES Action VOICE newsletter.
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 that 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, as time passes,it becomes increasingly difficult to obtain medical records, so that avenue of confirmation may not be available to you.