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Logo of D.E.S is it, DES Action group in France (Diethylstilbestrol)

"NOT TO GO ON ALL-FOURS; THAT IS THE LAW. ARE WE NOT MEN?"

H.G Wells, The Island of Doctor Moreau

Organization for Defending all Generations of Victims of DES

Distilbène ointment (diethylstilbestrol) against vulvar and anogenital pruritus, juvenile acne, eczema, hypertrichosis, by M Borne laboratories - Join D.E.S is it, the patient association for diethylstilbestrol victims

Diethylstilbestrol (or D.E.S.) is a synthetic teratogenic estrogen. In France, the drug has been marketed under the brand names Distilbène®, Stilboestrol-Borne® and Furostilboestrol®. It was widely prescribed to pregnant women between 1948 and 1977, mainly to prevent miscarriage, premature labor and related complications of pregnancy.

Because of an aggressive and effective marketing, a low-cost production and very lucrative profits, D.E.S has been prescribed while its carcinogenic properties were already questioned, and continued to be prescribed after 1971, when its toxicity has been clearly proven.

D.E.S has been shown to cause anatomic anomalies, sterility, reproductive changes and increase the risk of developing cancers in children exposed in utero (so-called "DES children", or second-generation patients). Due to a transgenerational effect, their children are also affected (so-called "DES grandchildren" or third-generation patients).

This endocrine disruptor has caused much more various less visible damages: mental disorders, behavioral disorders, neurodevelopmental disorders, endocrine disorders, etc.

This prenatal exposure to DES has led to the definition of a rare disease: Diethylstilbestrol syndrome (or Distilbene embryofoetopathy).

Diethylstilbestrol syndrome
Join DES is it, the association of patients affected by diethylstilbestrol (DES, Distilbene, Stilbestrol).

At present, patients exposed to DES are in medical limbo. And for good reason: as there is no associated Reference Centre, none can be diagnosed with Diethylstilbestrol Syndrome. There is no diagnostic protocol, no care protocol, no treatment, nothing.

What's more, since Diethylstilbestrol Syndrome was first defined, scientific studies have revealed far more far-reaching consequences, justifying its updating.

We are making it our priority to resolve these shortcomings.

D.E.S is it, also means providing moral support to families who have suffered, helping them to understand their rare disease and defending their cause in terms of the medical care to which they should be entitled.

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