Unintentionally Harming Patients in the Process of Trying to Improve their Health

The patient’s story began with a full-body CAT scan, a screening test used to detect tumors…

Dr. Marty Makary
Dr. Marty Makary, Surgeon, and Associate Professor, Johns Hopkins School of Medicine.

As a surgeon, I’m trained to crush cancer. For many years, every tumor I palpated and family I counseled drove me to hunt for cancer with vengeance, using every tool modern medicine has to offer. But recently, one patient reminded me that the quest to seek and destroy cancer can produce collateral damage.

Continue reading The Dangers of Hunting for Cancer
by Dr. Marty Makary, Time Magazine, 21 Feb 2014

Our posts about CancerOverDiagnosis and Screenings.

Ensemble pour mieux accompagner les malades

La septième Journée Internationale des maladies rares est dédiée au thème “Ensemble pour mieux accompagner les malades” afin de mettre en lumière l’importance de l’accompagnement et ses multiples facettes dans le domaine des maladies rares

C’est aujourd’hui la journée internationale des maladies rares. Cette septième Journée Internationale des maladies rares est dédiée au thème “Ensemble pour mieux accompagner les malades” afin de mettre en lumière l’importance de l’accompagnement et ses multiples facettes dans le domaine des maladies rares.

  • Vidéo par rarediseaseday, 12 Févr 2014.
  • 30 manifestations dans 14 régions de France avec la contribution des délégués régionaux qui agissent sur le terrain : tenue de stands, conférence, débats …
  • Une opération de sensibilisation auprès des classes de CE1 au CM2 avec la sortie d’un numéro spéciale du Petit Quotidien sur les maladies rares, avec lancement d’un concours
  • Une action de sensibilisation sur les réseaux sociaux : Application Facebook pour devenir Ambassadeur des maladies rares et partager à ses contacts

Maladies rares, plus d’Informations:

Une maladie est considérée comme rare si elle touche moins de 1 personne sur 2000.
Le Distilbène DES, maladie rare, en savoir plus

DES: The Complete Story

Possibly the most comprehensive book on Diethylstilbestrol

a Book by Cynthia Laitman Orenberg

DES the complete story book cover image
A comprehensive handbook on DES, diethylstilbestrol, explains the potential effects of the drug on mothers and their children and provides practical information for those exposed to the drug.

This prize-winning book provides comprehensive information on every aspect (including legal info) of the drug, DES, the artifical estrogen that was given to millions of pregnant women in the mistaken belief that it would prevent miscarriage. It is clearly written with the consumer in mind, well-organized and still accurate, even more than two decades since its publication.

Sources: Amazon customer review


Mrs Orenberg, a medical editor and writer for the University of Wisconsin Medical School, has written a treatise on the effects of diethylstilbestrol (DES) from the perspective of a mother whose daughter was exposed in utero to this drug. In 200 pages, she relates in lay terms essentially what is considered to be current knowledge regarding the development of DES, the first inexpensive, orally effective estrogenic substance; the clinical trials carried out by the Smiths in the 1940s regarding its usefulness in certain complications of pregnancy; its subsequent widespread use in several million pregnant women; the controlled double-blind studies that eventually demonstrated it to be no more effective than a placebo; the study in Boston by Herbst, Ulfelder, Scully, and Poskanzer that related exposure in utero to this drug to the development of a rare clear-cell adenocarcinoma of the vagina in several young women; and the subsequent establishment of a …

  • Sources: JAMA. 371088 1982;247(14):2027. doi:10.1001/jama.1982.03320390085060.
  • Check-out this DES books album on Flickr.
More DES DiEthylStilbestrol Resources

Magnetic Resonance Imaging MRI Radiation-Free Technique for Cancer Diagnosis

Technique allows for radiation-free detection of tumors

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Stanford University School of Medicine integrates research, education, patient care and community service.

The standard protocol for assessing the extent or development of cancer is through the usage of imaging machines like PET and CT scans, but such machines can expose the patient to loads of excessive radiation that increases their risk of secondary cancers later in life.

Researchers from Stanford University School of Medicine in California tested a new whole-body diffusion-weighted magnetic resonance imaging (MRI) technique that could eliminate the exposure risk altogether.


Significant and Strong Decline in Sperm Concentration and Morphology in the Whole of France

Semen quality trends in French regions are consistent with a global change in environmental exposure


Significant and strong decline in sperm concentration and morphology in the whole of France between 1989 and 2005, consistent with a global change in environmental exposure, especially according to the endocrine disruptor hypothesis.

A retrospective study carried on a large sample of men close to the general population recently showed a significant and strong decline in sperm concentration and morphology in the whole of France between 1989 and 2005. We studied these trends within each French region.Data were provided from the Fivnat database.

The study sample was constituted by male partners of sterile women whose both tubes were absent or blocked. They were located by assisted reproductive technologies (ART) center.A Bayesian spatio-temporal model with parametric time trends, adjusted for age, was used to model overall time trends for each region.

The results show that sperm concentration decreased in almost all French regions. Aquitaine showed the strongest decrease and Midi-Pyrénées had the lowest average for the whole period.For total motility most regions slightly increased while Bourgogne showed a steep and significant decrease.For normal morphology, most regions decreased. Aquitaine and Midi-Pyrénées showed a stronger decrease than the overall trend.

In conclusion, the decrease in sperm concentration and morphology, already shown at the scale of the French metropolitan territory, was observed in most French regions. This is consistent with a global change in environmental exposure, especially according to the endocrine disruptor hypothesis. Indeed ubiquitary exposure to these chemicals has been growing in the French general population since the fifties and the results don’t seem to support the lifestyle hypothesis. The strongest decreases and lowest values are consistently observed in two proximate regions both highly agricultural and densely populated.


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The Burden of Endocrine Disruptors


Effects of NeoNatal DES Exposure on Morphology and Growth Patterns of Endometrial Epithelial Cells

Cell cycle kinetics are altered in the developing mouse uterus following neonatal exposure to diethylstilbestrol


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Cell cycle kinetics, in addition to changes in morphology, are altered in the developing mouse uterus following neonatal exposure to DES.

The effects of neonatal diethylstilbestrol (DES) exposure on the morphology and proliferating patterns of endometrial epithelial cells were investigated at various stages of development in mice. Female CD-1 mice were given daily subcutaneous injections of 2 micrograms of DES in corn oil or corn oil alone (control) at 1-5 days of age and were killed at 5, 6, 7, 8, 15, and 22 days of age. At 5 days of age, the uteri of DES-treated mice had expanded lumina and undulated luminal surfaces lined by slightly elongated epithelial cells. At 6-8 days of age, marked infolding of clusters of hypertrophic elongated luminal epithelial cells was present; uteri had disorganized endometrial stromal and myometrial layers. At 15 and 22 days of age, the tissues from DES-treated mice had decreased numbers of endometrial glands, minimal stromal fibrosis, and smaller uterine horns than did the controls. Ultrastructurally, the endometrial epithelial cells of DES-treated mice at 5 and 8 days of age had distorted nuclei with condensed matrix and abundant secretory granules associated with rough endoplasmic reticulum and Golgi apparatus. At 8 days of age, an accumulation of fingerlike cytoplasmic processes that extended into the separated intercellular spaces and along the basal aspects of the endometrial epithelial cells were also observed. At 5-8 days of age, the proliferative activity of endometrial epithelial cells in DES-treated mice, identified by bromodeoxyuridine labeling, was significantly lower (10.5-1.7%) than that of the controls (25.5-19.8%). In situ analysis of endometrial luminal epithelial cells for DNA fragmentation representing apoptosis revealed < or = 0.1% and > 10% in the DES-treated and control mice at 5-8 days of age, respectively. The data show that cell cycle kinetics, in addition to changes in morphology, are altered in the developing mouse uterus following neonatal exposure to DES.


NCBIDr Retha Newbold, PMID: 10356709, May 1999 – Full article Toxicol Pathol May 1999 vol. 27 no. 3 325-333 – Effects of Neonatal Diethylstilbestrol (DES) Exposure on Morphology and Growth Patterns of Endometrial Epithelial Cells in CD-1 Mice.

More DES DiEthylStilbestrol Resources

Why Mammograms should not be used for Breast Cancer Screening

Video by Dr Saputo, Feb 2014

The conclusion of a 25 year prospective study published in the British Medical Journal in February of 2014 was that screening mammograms not only do not save lives but also lead to a 22% over-diagnosis that leads to unnecessary testing and treatment in women between the ages of 50 and 69.
Video by DoctorSaputo, published on 24 Feb 2014.

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Chemical threat to brain development


ASD: 1 in 88 Children aged 8 Years identified with an Autism Spectrum Disorder in the United States

Prevalence of Autism in the US, CDC, 2012

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators


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Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior. Symptoms typically are apparent before age 3 years. The complex nature of these disorders, coupled with a lack of biologic markers for diagnosis and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASDs. Accurate reporting of data is essential to understand the prevalence of ASDs in the population and can help direct research.

Period Covered:

Description of System:
The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that estimates the prevalence of ASDs and describes other characteristics among children aged 8 years whose parents or guardians reside within 14 ADDM sites in the United States. ADDM does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children’s evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association’s Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder. The first phase of the ADDM methodology involves screening and abstraction of comprehensive evaluations completed by professional providers at multiple data sources in the community. Multiple data sources are included, ranging from general pediatric health clinics to specialized programs for children with developmental disabilities. In addition, many ADDM sites also review and abstract records of children receiving special education services in public schools. In the second phase of the study, all abstracted evaluations are reviewed by trained clinicians to determine ASD case status. Because the case definition and surveillance methods have remained consistent across all ADDM surveillance years to date, comparisons to results for earlier surveillance years can be made. This report provides updated ASD prevalence estimates from the 2008 surveillance year, representing 14 ADDM areas in the United States. In addition to prevalence estimates, characteristics of the population of children with ASDs are described, as well as detailed comparisons of the 2008 surveillance year findings with those for the 2002 and 2006 surveillance years.

For 2008, the overall estimated prevalence of ASDs among the 14 ADDM sites was 11.3 per 1,000 (one in 88) children aged 8 years who were living in these communities during 2008. Overall ASD prevalence estimates varied widely across all sites (range: 4.8–21.2 per 1,000 children aged 8 years). ASD prevalence estimates also varied widely by sex and by racial/ethnic group. Approximately one in 54 boys and one in 252 girls living in the ADDM Network communities were identified as having ASDs. Comparison of 2008 findings with those for earlier surveillance years indicated an increase in estimated ASD prevalence of 23% when the 2008 data were compared with the data for 2006 (from 9.0 per 1,000 children aged 8 years in 2006 to 11.0 in 2008 for the 11 sites that provided data for both surveillance years) and an estimated increase of 78% when the 2008 data were compared with the data for 2002 (from 6.4 per 1,000 children aged 8 years in 2002 to 11.4 in 2008 for the 13 sites that provided data for both surveillance years). Because the ADDM Network sites do not make up a nationally representative sample, these combined prevalence estimates should not be generalized to the United States as a whole.

These data confirm that the estimated prevalence of ASDs identified in the ADDM network surveillance populations continues to increase. The extent to which these increases reflect better case ascertainment as a result of increases in awareness and access to services or true increases in prevalence of ASD symptoms is not known. ASDs continue to be an important public health concern in the United States, underscoring the need for continued resources to identify potential risk factors and to provide essential supports for persons with ASDs and their families.

Public Health Action:
Given substantial increases in ASD prevalence estimates over a relatively short period, overall and within various subgroups of the population, continued monitoring is needed to quantify and understand these patterns. With 5 biennial surveillance years completed in the past decade, the ADDM Network continues to monitor prevalence and characteristics of ASDs and other developmental disabilities for the 2010 surveillance year. Further work is needed to evaluate multiple factors contributing to increases in estimated ASD prevalence over time. ADDM Network investigators continue to explore these factors, with a focus on understanding disparities in the identification of ASDs among certain subgroups and on how these disparities have contributed to changes in the estimated prevalence of ASDs. CDC is partnering with other federal and private partners in a coordinated response to identify risk factors for ASDs and to meet the needs of persons with ASDs and their families.

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