5 posts tagged “autoimmune disease”

Is there a medical gender gap? The not-so-brief history of sexism in medicine

Posted March 27th, 2018 by

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today.

History of “hysteria”

Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues.

  • An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body.
  • The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved.
  • In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women.
  • During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.”

In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the concept still lingered in broader culture, according to the British Science Museum.

Present day sexism

Writer Maya Dusenbery, who has rheumatoid arthritis, makes the case that sexism still haunts modern medicine in a new book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Here are some key stats and dates she cites:

  • Three-quarters of the estimated 50 million Americans with autoimmune diseases are women; patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search (see our recent report on the diagnosis “lag time” for PatientsLikeMe members with various conditions)
  • Researchers understand far less about women’s biology because of a scientific gender gap. Up until 1993, the National Institutes of Health wasn’t required to track how many women were included in the research it funded with federal taxpayer dollars. Women (particularly those of childbearing age) were often excluded from clinical trials because of “a paternalistic concern about the risks to them and their future offspring” and because “researchers found it easier to study only men” — and even research on animals used (cheaper) male mice.
  • In addition to the research gap, there’s also still a “trust gap” in medicine, Dusenbery says. “While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well,” she says, noting that other terms that have taken its place include: Briquet’s syndrome, somatization, conversion disorder, psychosomatic, psychogenic, and functional symptoms. About 70 percent of those with “medically unexplained symptoms” (today’s popular phrase that often implies “somatized emotional distress”) are women.

Some patients are raising their voices about these gaps. Documentary filmmaker Jennifer Brea, who has chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), addresses the trust gap in her recent film Unrest and her TED Talk, “What happens when you have a disease doctors can’t diagnose.” And some conditions that are far more common among female patients, such as lupus, are finally getting more attention from researchers.

But Dusenbery wonders how many countless women have fallen through the cracks of these gaps in the system. “The harm done by medicine’s gender bias is difficult to quantify but staggering to consider.”

Have you experienced gender bias in your medical treatment? Join PatientsLikeMe today to connect with 392,150 women living with health conditions.

Share this post on Twitter and help spread the word.


PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Posted August 15th, 2012 by

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S.

PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes.

“A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.”

According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States.

“Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to establish and apply innovative solutions that improve disease management and enhance the patient experience.”

Under the agreement, PatientsLikeMe will work directly with Merck’s clinical researchers and epidemiologists to analyze and interpret psoriasis patient-reported data.

PatientsLikeMe has an active community of psoriasis patients, where nearly 2,000 people share data and stories to reveal what it’s like to have the disease and what they do to treat it. Health profiles, forum postings and journal entries highlight their experiences, and a new survey reveals how the summer season affects them physically and emotionally. Go to http://plmjoin.com/psoriasis to learn more.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and https://blog.patientslikeme.com.]