Tuesday 22 September 2009

Talking About DES

Enquirers very often say to us how difficult it is to broach the DES subject with family members. Even though we all know deep down how important it is to be informed about DES exposure and its associated vital health care, raising this topic with family can still be a confronting and emotionally charged task. Of great help to us, DES Action USA recently published on this topic over two issues in their newsletter Voice. Here are the reprinted articles from Voice #118 and #119:

Tell Your Children About DES

By Fran Howell

Talking about DES may be one of the most important things you do with your children, and it will be time well spent.

In the early days of DES Action we mounted a successful campaign urging individuals born between 1938 and 1971 (and beyond) to Ask Your Mother about DES. Many of you probably still remember it. Now as our organization moves into its fourth decade it seems appropriate to evolve this effort into a new and equally important phase: Tell Your Children.

Those who were exposed to DES, either before birth or as grandchildren, have a right and certainly a need to know it is part of their health histories. They can have recommended health screenings and can make informed medical choices, especially in relation to the use of extra hormones.

Telling children about their DES exposure is not easy, acknowledges respected women’s health care provider, Candy Tedeschi. “Over the years mothers have told me they didn’t need to tell their DES Daughters or Sons, as long as their children were healthy and had no medical problems from their exposure. If any problems developed, THEN they would tell them.”

But Tedeschi points out the flaw in that logic, “What happens if the time is never right or something happens to you, or your child doesn’t tell you about a problem that developed in adulthood?”

So the time to have a conversation about DES could be now for DES Mothers who haven’t yet told their children. It also might be the right time for DES Daughters and Sons, if their children are now teenagers. DES Action member and Clinical Psychologist Linda Bortell, Psy.D., suggests having the discussion at an age appropriate time, perhaps just prior to the first gynecological exam or when potential health issues might come up for this age group.

“Keep it simple and straight forward,” says Bortell. “DES was something grandma was given. She did a good job and did what her doctor told her to do. There isn’t a lot of research yet into how it might affect you, but you should know about it. When you see a doctor, say you are a DES Grandchild.”

According to Bortell, “Talk about DES with a sense of empowerment – this is who you are and it doesn’t have to define your life, but it is important information you need to know.” She adds, “There is no shame in it, and no one did anything wrong, except the drug companies.”

Friction between parents and children, especially between mothers and daughters, is legendary. Planning what you say is a good idea. Then understand that your child may become angry at the news. Bortell says that’s natural.

Explain that you didn’t ask to be DES exposed, nor did grandma, but in a matter of fact way, discuss how you feel. Then reinforce the message that you may not be able to protect the child from everything, but you will be there to help in any way possible.

“Admit you don’t have all the answers, but in a very matter of fact conversation tell your children they were exposed to DES and if they want to read more about it you can help them with books and web sites. Let them know you aren’t going to drop this news on them and walk away.” Consider a DES Action membership for your child when he/she leaves home.

For adult DES Granddaughters, Bortell says you can follow up by asking if they’ve been to the gynecologist recently. “Tell them you are asking because you care, not because you want to nag.”

DES exposure hits us right at the core of our being, so this is a conversation to have in private with your child. Perhaps while driving, having lunch out together, or at bedtime. “Choosing a time and place where you both feel comfortable is crucial,” says Bortell.

Recently a DES Daughter told us that her mother asked if she had access to good, current DES information. She was happy to tell her mom – without a moment’s hesitation – she is a DES Action member, so she is up to date on DES. That family certainly has it right.

Information Is Power – Tell Your Children About DES

By Fran Howell

You can’t change your genes, or the toxic exposures you or your parents faced, but knowing about them can spur you into taking the actions needed to protect your health. It may mean vigilance in having annual mammograms, or avoiding extra hormones, such as HRT. Knowing all the facts can lead to better health care decision-making.

In the case of DES exposure, our children depend on us to tell them what they should know. It is not an easy topic, but DES Mothers should inform their children and DES Daughters and Sons should do the same for theirs.

If grandma had diabetes or dad has heart problems, it is common for the next generation to be made aware of it. The same should hold true for DES exposure, but in many families it does not. Since we ran an article in the last VOICE (Fall 2008 Issue 118), we heard from several members about their experiences. This is from DES Daughter Elizabeth:

“I have two biological daughters, Lea, who is 23, and Rose, who is 18. Rose has cerebral palsy, developmental delays, a seizure disorder and vision impairment. Because of all we have been through with Rose, who was born prematurely as a result, I believe, of my DES exposure, Lea has always known about DES. Two years ago Lea was in extreme pain with what was probably a burst ovarian cyst. When I told the emergency room doctor about DES, I was glad it was not the first time Lea heard about it.”

Mary, another DES Daughter, shared the reactions of her two 20-something children. She described how both her daughter and son wanted to ignore talk of DES.

“Justin did not like my mentioning to the doctor that I thought his testicular cancer might be the result of his grandmother being prescribed DES (and of course the doctor’s reaction didn’t help). Simone is good about getting yearly check-ups so that stuck, but she absolutely refuses to talk about DES, saying I am a “worrier.” Despite her attitude, I will always share new research results she should know of, while hoping she is right about my worrying needlessly.”

DES Daughter Elane emailed her sons living across the country.

“I had actually never talked to them about DES at all before. Both responded with terse, but positive comments (as boys are likely to do when talking about rather personal information, such as doing self-examinations). It was not hard at all, and I was happy that I did it, and that they seemed to pay attention to what I said.”

We have been asked whether it is prudent to tell DES Grandchildren about their family history of exposure when no specific health screenings have been identified for them. Of course, that could change, and unless they know about DES they won’t be on alert for information they might need.

Currently, animal studies, which are good predictors of the human experience, tell us that we should watch for reproductive tract lesions in DES Grandsons, and DES Granddaughters may be at increased risk for tumors. The first study involving humans shows DES Granddaughters taking longer to achieve regular menstrual periods than their unexposed counterparts.

We don’t know, for example, what impact the hormones in birth control pills might have on DES Granddaughters. We hope for an answer in the near future, but science has yet to catch up with our concerns. That has been the situation all along with DES exposure. Similarly, doctors brush aside discussion of DES Grandchildren issues. But to quote DES Action Co-founder Pat Cody, “that does not mean we need to be governed by their ignorance, arrogance and indifference.” Perhaps long-time DES Action member Molly sums it up best:

“I have no children to tell. But I am deeply grateful to my mother for taking the issue seriously and telling us in no uncertain terms that DES was something we’d have to be conscious of our entire lives. I feel very lucky she told us, and I’m glad that she did.”

DES Action Australia-NSW has available the booklet “Talking about DES” (US National cancer Institute) and the listed resources of:

Relationships Australia


National Counselling Service

Phone 1300 364 277 for details of nearest service


Mothersafe Counselling Service (NSW)

for exposures during pregnancy

Phone 02 93826539

Toll free 1800 647848

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