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Sjogrens Topics => Living With Sjogren's => Topic started by: Epson on January 28, 2009, 10:10:16 AM

Title: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 10:10:16 AM
I have never brought this up before, but I was wondering how many of you had a mother or grandmother that took DES to prevent a miscarriage during her pregnancy.  The drug Diethylstilbestrol (DES) was used from the 1940 to 1975 when it became apparent the  drug had horrendous side effects.

The drug is believed to increase risk of autoimmune disorders by 50% and increase breast, uterus, testicular and bladder cancers.
There are a ton of articles on the subject and I have the web site of one that will give you the jest of the story if your interested. 
www.lawyersandsettlements.com/articles/00284/DES_Miscarriage_Cancer.html
Title: Re: Are you the child or grandchild of DES
Post by: lesleyjoy on January 28, 2009, 11:16:24 AM
Hi Epson, I know quite a bit about this subject as DES was used in New Zealand for miscarriages (of course it never worked and was ditched in favour of progesterone) and later on in a weaker form as the 'morning after pill'. I know a family where the mother took it during her 2 pregnancies with her sons (1952 and 1954). The eldest is sterile and the second son's wife kept having miscarriages due to malformed foetus. Probably his sperm was genetically mutated  :( Sad eh.

After this mother had, had her 2 children (sons) she didn't expect to have more children, but she had a daughter! Thank goodness she wasn't having the DES during that pregnancy as it can cause a clear cell cervical and vaginal cancers in the teenage daughters!!!

Fortunately this drug was never used in the UK. Interesting subject Epson, do you suspect that your mother took it when she was pregnant with you?

Lesley (NZ)
Title: Re: Are you the child or grandchild of DES
Post by: Sandra on January 28, 2009, 11:19:56 AM
Interesting idea about where this AI stuff all comes from. I have an idea that drugs like the one you speak of or others and outside or enviromental stuff like DDT etc are to blame foa allot of AI issues many, many folks like us at our age (middle) now suffer from. My family a family of 12 incl mom and dad (guess mom never took DES  ;D) are an entire family of AI oddities, thyroid, diabetes, Addison's, Sjs, Lupus, RA and a few more...so is it chemical/enviromental or is it heredity? My gram also suffered allot of AI stuff? Sandra
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 11:35:03 AM
Lesley,

Yes I am very sure that she took DES, 99% sure, she had 5 miscarriages.
Title: Re: Are you the child or grandchild of DES
Post by: Jesse88 on January 28, 2009, 01:29:29 PM
Yep, my mom took DES.  I've always wondered if it had any effect on me.  I used to worry about vaginal cancer but the doctor told me it would have happened already (I'm 56).  I wonder if that's also true for bladder cancer.  It's scary, all of it. 
Title: Re: Are you the child or grandchild of DES
Post by: lesleyjoy on January 28, 2009, 02:10:05 PM
Epson, is your cancer prostate or other urogenital? Just wondering because prostate cancer is very common in men  :( Have you got any siblings at all?
My ex-husbands mother had several miscarriages before she had him in August 1957 but she was under a specialist (not literally, but with her who knows lol) and was given a form of progesterone when she was pregnant with him. This is probably why he survived as progesterone is essential to secure implantation of the egg/foetus early on in pregnancy. I'm not sure if she had the same or any medication with the other miscarriages. She's still alive at 84 and my ex hasn't had any problems with fertility etc.

Hi Sandra, yes it's rather scary but as you say, I think it would have shown itself by now so maybe your mother only had a small amount of it. I think with all these things, that there has to be some genetic susceptibility to the cancer etc.

I know that used as the morning after pill it was relatively successful, but if the woman took it later that she should have after possible conception, and a pregnancy resulted, then the offspring had the same troubles as the DES in-vitro offspring!

Interesting, Lesley (NZ)



Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 03:11:29 PM
Lesley,

Nothing wrong with the prostate, well not yet knock on wood, but now the ureter is blocked and a dye injection and xray on Friday should show what is going on, will most likely have a stint place in the ureter and bladder biopsy.

I have been told by more then one doctor the it is very rare for someone my age to have bladder cancer and even more rare for someone who has never smoked.

DES is known to cause bladder cancer, I just wonder what might be in-store for my brothers girls, since it can show up in the next generation.
Title: Re: Are you the child or grandchild of DES
Post by: lesleyjoy on January 28, 2009, 03:43:28 PM
Epson, with the knowledge you have of this, you can inform your brother/and his offspring. I take it that your brother hasn't had any trouble as yet and hopefully will never do. I read that bladder cancer is 3 times more common in men than in women but with it is usually found at a later stage in women.
It is my understanding that the women who took DES are at far less risk than their in-vitro offspring, who were developing at the time  :(  I've read that they also put small amounts of DES in vitamin tablets recommended for pregnant women in the US  :o

From my reading DES was widely used for a variety of conditions and to treat some male cancers. It was used to dry up milk in mothers who couldn't or didn't opt to breast feed their babies! My mother didn't breastfeed my younger brother who was born in 1966, so she may have had some herself!

Lesley (NZ)

http://www.desaction.org/
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 05:26:35 PM
Lesley,

DES was also use in cattle feed  to increase their size in the U.S.  Now we just have high fructose corn sweetener with Mercury in it.
Title: Re: Are you the child or grandchild of DES
Post by: eyeamdry on January 28, 2009, 06:50:44 PM
QuoteInteresting idea about where this AI stuff all comes from. I have an idea that drugs like the one you speak of or others and outside or enviromental stuff like DDT etc are to blame foa allot of AI issues many, many folks like us at our age (middle) now suffer from.

I'm sure my mother never took DES, although I can't be positive because she passed when I was 25 so I can't check with her.  BUT, mentioning DDT brings chills to me.  I was remembering DDT the other day and we lived on a farm on the US/Canadian border and I remember my mother spraying the kitchen with DDT for flies.  We would all have to leave and go away or go outside for a certain length of time.  Then we would go back in and BREATHE this stuff!  Heaven knows it was all over the house and I'm sure many others were also exposed as I was.  My sister is on her third separate cancer in 20 years although I don't believe she has any AI issues.  I transferred them to my daughter, however, as she has Type I diabetes and Graves. 

We'll never really know how these things affected us.  Actually, I don't like to think about it as there isn't much we can do about it after we are aware.  Good thread.  Lucy
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 07:33:43 PM
When I was a kid and the city would fog the streets at night with DDT to kill mosquitoes, lots of kids would run through the DDT fog, that can't be good.

How many of you remember the X-ray machines in shoe stores that let you see how your foot fit in the shoes?  The machines were not shielded in any way, so employees were bombarded with radiation all day long, wonder why I am not dead yet?
Title: Re: Are you the child or grandchild of DES
Post by: eyeamdry on January 28, 2009, 08:06:02 PM
Yes, Epson, I remember those x-ray machines.  I wonder if I can blame my sore big toe joint on using that darn thing? 
I also would wonder (really) how much radiation those machines could emit just sitting there all the time. 
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 28, 2009, 08:38:11 PM
Eyeamdry,

Enough to make a young mans hair turn white and kill his sperm!
Title: Re: Are you the child or grandchild of DES
Post by: Maria3667 on January 29, 2009, 03:37:21 AM
Epson,

Yes I'm too a so called 'DES-daughter'.

Maybe it's a good idea to start a poll about this topic in the polls-section?

Best wishes,
Maria
Title: Re: Are you the child or grandchild of DES
Post by: Patze on January 29, 2009, 04:00:34 AM
Hi Epson,

I too remember them spraying the city (and suburban) neighborhoods with the stuff!  I remember that we were supposed to stay inside, but kids being kids, I had to be out there with the other "delinquents". ;)  :D

It does make one wonder if that's why some of us are here?  Amazing.


Patze
Title: Re: Are you the child or grandchild of DES
Post by: Sandra on January 29, 2009, 06:55:30 AM
I'm giggilng (with fear?) reading this thread, my hubby and I and freinds speak about this subject on occasion, it's better than a good horror film...anyway my hubby tells the story of the "fogging" at his summer cottage as a kid where the camp super would fog the campground and he was like a kind of pied-piper or kid magnet as the kids would all scramble out of their cottages and trailers to follow him running through the fog.....good lord what a thought....didn't anybody think that it might not be such a good idea? Very happy to say my hubby is 46 and strong and healthy and I hope he stays that way always but HOLY SMOKE!  :o Sandra
Title: Re: Are you the child or grandchild of DES
Post by: Sjenny on January 29, 2009, 07:44:47 AM
Yes, the effects of DES are terrible.

But, actually, don't worry about DDT - there is a lot of evidence that indicates it is safe.  There is even evidence that it fights cancer, seriously.

See http://www.21stcenturysciencetech.com/articles/Fall02/Mosquitoes.html

Sue
(Ducks and runs from wave of politically correct disapproval and hysteria that will be coming my way.  Yeah, I was carefully brainwashed by Rachel Carson's book Silent Spring in grade school just like everybody else.  Then I grew up and started thinking for myself.)
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 29, 2009, 09:12:03 AM
Sjenny,

DDT might be safe for humans, in low doses or under controlled environments, but it almost drove numerous bird species to extinction, including the Bald Eagle.   Thalidomide is used to treat cancer patients, but we all know the horrible deformities of Thalidomide babies.

Keep the worms in my apple and you can have the DDT.  I worked in the chemical industry for a number of years, what people don't know can kill them or certainly will compromise their health.
Title: Re: Are you the child or grandchild of DES
Post by: Jesse88 on January 29, 2009, 10:33:25 AM
Oh boy, I remember those fog-spraying trucks.  As kids we used to ride our bikes behind the trucks and be just enveloped in the fog.  It's amazing that I don't have an extra digit growing out of my hands or on top of my head!  I didn't know what the pesticide was until I read this thread.  DDT?  Yikes! 
Title: Re: Are you the child or grandchild of DES
Post by: Sjenny on January 29, 2009, 11:00:28 AM
Epson:

For another eye opening point of view, read the following:

http://www.jpands.org/vol9no3/edwards.pdf

Bittman et al.  demonstrated that DDT was NOT responsible for the thinning of egg shells and did NOT drive numerous bird species including the Bald Eagle to extinction.

The real problem DDT effectively addresses was NOT the removal of worms in apples but the real problem of millions of people dying from malaria, (including two children every minute) as we have today WITHOUT DDT.  http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=39303

I wasn't suggesting people treat their cancer by running through DDT fogs, only that there may be a lot of unjustified hysteria without an unemotional review of the facts.

Regarding thalidomide - researchers were conducting studies of treatment for Sjs and thalidomide.  See http://clinicaltrials.gov/ct2/show/NCT00001599

Does anybody know what the results were?

(Bet you'd take it if it worked and you aren't planning on getting pregnant now, are you?)

Sue
Title: Re: Are you the child or grandchild of DES
Post by: Sandra on January 29, 2009, 11:22:45 AM
Can't say I have spent much time pooring over studies, but I do find that when there is an outcry about most anything there is where the truth can be found, kind of like safety in numbers. I suppose it all about spin and the almightly dollar. Who can pay the price to win the debate. There are lots of drugs and poisons out there that are a benifit in some way no matter how small and that is a spin I guess. It would be interesting to know both sides of the DDT thing, malaria vs disease, the good and the bad. Is there anyone that give an honest education of both sides and in this world how would we know who is paying for even that opinion? Sandra
Title: Re: Are you the child or grandchild of DES
Post by: fatburningmachine on January 29, 2009, 12:41:38 PM
Is there a way to find out if our moms took DES. My mother died in 1954 and I was just a child.
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 29, 2009, 02:15:29 PM
Sue ,

I worked for a company that made a lot of chemicals, including DDT, no one ever thought DDT or most of the other chemicals that they made were safe, but they did  pay people to say they were safe or should I say that they gave research grants to people who just happen to say what the company wanted them to say.

We were told by the tobacco companies cigarette smoke was safe and scientific evidents to boot and I am sure some people believe it.  The chemical industry, just like big pharma doesn't stop selling anything that makes them money, unless there is something wrong with it, they have more lobbyist then Carters has pills, I know, we had to donate part of our pay to the lobbyist fund.
Title: Re: Are you the child or grandchild of DES
Post by: Sjenny on January 29, 2009, 02:58:40 PM
Epson:

Big Environmental will engage in fear mongering to push their political agenda with one scam crisis after another.  It all means more power, money and control for them. THEY have more lobbyists than Carter has pills also.
See http://www.undueinfluence.com/worldnetdaily.htm

Read "Environmental Overkill - Whatever Happened to Common Sense"  http://www.amazon.com/Environmental-Overkill-Whatever-Happened-Common/dp/0895265125

Sue
Title: Re: Are you the child or grandchild of DES
Post by: Epson on January 29, 2009, 04:08:45 PM
Jenny,

Well, I guess we will just agree to disagree, I am not into conspiracies and some of the people you have sighted have worked for right wing think tanks, not the most impartial people.  I just know what I saw when I worked in the industry and I am sure you have more first hand knowledge about these things the I do, your not a chemical engineer by chance?

Oh, and for the record, Rachel Carson never said DDT should be banned, just studied, the government did the research over a seven year period, maybe they were a commies, I don't know and maybe all the books I read were wrong.

Right now all I know is I have Sjogren's and cancer and I go under the knife tomorrow and there is nothing I can do about any of this or DDT. 
Title: Re: Are you the child or grandchild of DES
Post by: Sjenny on January 29, 2009, 04:32:28 PM
Epson:

I am really sorry you have to go under the knife and I pray everything will go well for you.

Sue

I'm a Biologist.  I worked for a big corporation too and I never heard or saw anybody being deliberately evil.  (Really, it's bad for business to kill, sicken and maim your customers.  Who wants to be continuously sued like Big Tobacco?).