Autoimmune Disease Incidence among Women prenatally exposed to Diethylstilbestrol

This 2010 study provides little support for an association between prenatal DES exposure and development of autoimmune disease

DES Follow-up Study Summary

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This 2010 study provides little support for an association between prenatal DES exposure and development of autoimmune disease.

Data shows no difference between rates of autoimmune diseases among the DES exposed and unexposed women.

Autoimmune disease is a class of diseases where antibodies usually meant to recognize foreign organisms instead react to a person’s own cells and tissues. We studied four specific types of autoimmune disease to investigate whether prenatal Diethylstilbestrol (DES) exposure affects the occurrence of these diseases. Systemic Lupus Erythematosus, or lupus, is an inflammatory disease resulting from an antibody attack on tissues and organs resulting in skin rashes, arthritis (chronic joint swelling), renal failure, or nervous system disorders. Rheumatoid arthritis (RA), not to be confused with commonly occurring osteoarthritis, is a disorder resulting from an immune response to an individual’s own connective tissue. The disease results in joint swelling and stiffness. Optic neuritis (ON) is a swelling of the optic nerve due to immune response resulting in vision loss in one eye, painful eye movement, and loss of color vision. Idiopathic Thrombocytopenia Purpura (ITP) is an unexplained decrease in the amount of platelets, cells designed to aid in blood clotting.

The rates of these diseases were compared among women who were and were not prenatally exposed to DES. Women who reported a diagnosis of any of these four diseases on the questionnaires sent in 1994, 1998, or 2001 were asked for permission to contact their doctors to verify the diagnosis. Considering all verified reports, there was no difference between the combined rates of these autoimmune diseases among the DES-exposed and unexposed women. Individually, there was also no difference in the rates of lupus and ON in these two groups. While there was no overall difference in RA between the two groups, there did appear to be a higher rate of RA among exposed women under the age of 45 compared to unexposed women of the same age. This difference however was based on a small number of cases (17 DES-exposed and 2 unexposed) and as a result there is some uncertainty as to the magnitude of this increase. Also there was no increase in RA among DES-exposed women 45 years and older compared with unexposed women of the same age. There were too few ITP cases to conclude whether or not there was a difference in the rate of this disease in the two groups.

Research has suggested that early life characteristics, such as size at birth and age at menarche, may be associated with health conditions later in life. For example, some studies have suggested that low birth weight babies tend to have a higher risk of cardiovascular disease later in life. Other studies have shown that women who begin having periods at a young age have a slightly higher risk of breast cancer than those who begin menstruation later.

2010 Study Abstract

Animal studies have suggested that prenatal diethylstilbestrol (DES) exposure may alter immune system development and function including antigen self-recognition. A cohort study was conducted to investigate whether prenatal DES exposure might influence the incidence of at least some specific autoimmune diseases in women.

A group of women who were and were not prenatally exposed to DES have been followed for more than 25 years for numerous health outcomes including autoimmune disease. To verify diagnoses, medical records or physician abstracts were requested for all women who reported a diagnosis of rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), optic neuritis (ON), and idiopathic thrombocytopenic purpura (ITP). Incidence rates of these autoimmune diseases were compared between women who were and who were not prenatally DES-exposed.

Overall, there was no increase in verified autoimmune disease among DES-exposed women relative to those who were not exposed (RR 1.2; 95% CI 0.7, 2.1). There was, however, a positive association between prenatal DES exposure and RA among women younger than 45 years (RR 4.9; 95% CI 1.1, 21.6) and an inverse association among women who were 45 years and older (RR 0.1; 95% CI 0.01, 0.7).

Overall, these data provide little support for an association between prenatal DES exposure and development of autoimmune disease. The implication that such exposure may be related to RA in an unusual age-related manner is based on small numbers of cases and warrants further study.


  • Autoimmune disease incidence among women prenatally exposed to diethylstilbestrol,NCBI, PMID: 20634240, 2010 Oct;37(10):2167-73. doi: 10.3899/jrheum.091092. Epub 2010 Jul 15. Full text link.
  • NCI, DES Follow-up Study Published Papers.
More DES DiEthylStilbestrol Resources

4 thoughts on “Autoimmune Disease Incidence among Women prenatally exposed to Diethylstilbestrol”

  1. I’m not computer savvy so bear with me. I am 50 yrs. old and a DES Daughter and more times than not received a diagnoses for skin rashes. I have other issues as a child like grand maul seizers, 4 yrs ago I had a hamartoma removed from my lung, and Neuroma in my feet ect… I have a 31 yr. old son my 1st pregnancy he was 3 Lbs. 14 Oz. all his organs fully matured and developed, He was 6 weeks late or more as measured by 40 weeks out per the date on my first positive urine test). I was pregnant 4 more times after my son. All my other pregnancies were losses (Miscarriage, Bios Ovum, Still Birth & Epitomic at 11 weeks with twins (I had no spotting or pain no indication anything was wrong till my 11th week) Doc did surgery to remove tube & said I had a liter dried blood in my abdomen and near a full liter that was liquid.
    My mother had 6 pregnancy, her first 2 born lost the next 3 then pregnant with me and took DES in the beginning stage of pregnancy. My mother has had renal failure, painful eye movement, Idiopathic Thrombocytopenia Purpura (ITP), hospitalized the 1st time platelets dropped to 8. Hospitalized the 2nd time platelets dropped to 15. (Dropping below 20 brain bleed can happen) Note my mother worked for the health district and always got blood draws on a yearly basis. Her norm for plates was 250. My mother is now 76 yrs. old and unfortunately diagnosed at age 73 with FTD disease.
    I’m just finding this information on DES
    Been looking for years to find information on DES
    Any other links would be appreciated.
    Thank you

    1. Hi Annette and really sorry to hear your tragic story, thank you for sharing it with our readers.
      We try to gather studies by topics and you can use the links at the bottom of this article to find those studies.
      I can direct you to a specific study if I know what you are looking for.
      There are some international groups providing some support to the DES affected.
      There are some communities on Facebook for the DES victims to share their thoughts.
      Again I can direct you.
      Kind regards

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