The albino people of Tanzania

Slate has some images from photographer Liron Shimoni’s new series White Shadows. Albinism occurs at a far higher rate in Tanzania than the rest of the world and people who have it can be subject to discrimination, abuse, or murder. From the text that accompanies the photographs:

“In the villages, they are viewed as demons or subhuman, and called offensive terms such as ‘zero-zero’ or ‘white meat.’ There is also a widespread belief that getting close to an albino will result in the catching of the disease, or that a pregnant woman who has physical contact with an albino will then birth an albino baby of her own.”

(c) Liron Shimoni

(c) Liron Shimoni

Catching (up with) MERS

Today a MERS case was announced in another country — Italy, where the patient is a man who recently traveled to Jordan (it’s being reported that one of his sons there has similar symptoms). This makes at least fifty known patients with greater than 50% mortality rate. Time to introduce our latest potentially large-scale viral adversary.

Middle East respiratory syndrome coronavirus (MERS-CoV) is one of several coronaviruses humans contract.  In fact, about 30% of cases of the “common cold” are caused by coronaviruses, but with  coronaviruses SARS and MERS, the illness can be far more severe.  Under the electron microscope, MERS looks like this:

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

It’s deadly.  As of May 29th, the WHO knew of 49 confirmed cases and 27 deaths. That’s a 55% mortality rate compared to the <10% rate of SARS.  (Reuters today says 51 patients with 30 deaths: 58% mortality.)

It can progress quickly. This slide from an article in the New England Journal of Medicine shows the rapid change in four patients, a family cluster of four men who became sick last fall. Two of them died.

We don’t know where it came from, how it can be transmitted, or much else.  The assumption is that there’s an animal source, but that hasn’t been found.  We know it can be transmitted from person-to-person, but not exactly how that happens or how contagious MERS is.  Those aren’t the only puzzles. As Laurie Garrett wrote about the case above, “The cluster of cases in this family presents a list of mysteries: Why were all the sick and dead men? With 28 people in this three-building urban household, why were these four infected, and the other 24 spared? The family lived in a big city, had no animals, ate supermarket food and had jobs that offered no contact with the virus. How did they catch MERS?”

The incubation period may be substantial.  A study of French cases of MERS released online by The Lancet yesterday estimates one incubation period as 9-12 days. This calls for longer isolation than expected and raises the risk that the virus will spread as people who don’t yet feel sick travel.

It’s centered in a troubled area.  It’s called Middle East respiratory syndrome for a reason: all currently known cases originated there (one transmission is known to have taken place outside of that region, but from a patient infected there). Millions of Syrians have been displaced during their civil war and many refugees are crammed together in camps, like this one in Jordan that was featured on yesterday’s PBS Newshour.  If the virus were to get a foothold in a place like that, it could quickly overwhelm the medical resources for refugee care.

World No Tobacco Day

Today is the World Health Organization’s World No Tobacco Day

WHO World No Tobacco Day

I’m not entirely comfortable with the WHO’s approach, though I agree with the goal.  Another poster asks, “Are you being manipulated?” which could suggest tobacco users are gullible, weak-willed followers.  It’s standard to refer to tobacco use as an epidemic and that has been the case for decades, but I struggle with drawing a line between what is and what is not an epidemic.  And, I’m skeptical about the lure to imitate movie smokers nowadays, but that could be an ethnocentric view: I grew up in a culture where the damage caused by smoking was well-known and taught to us at an early age — making movie smoking nothing more than character development — and at a time when TV and radio ads were banned.  It was a long way from 1950:

1950-cigarettes-that-soothe-your-throat

On a related note, this seems like the perfect opportunity to link to Quit Tobacco International, a project focused on tobacco use in India and Indonesia and founded by, among others, anthropologists Mark and Mimi Nichter.  From the site:

Over the next two decades, deaths due to tobacco will soar to 4.2 million annually in Asian countries, nearly twice that of more developed regions. The wealth of research knowledge and lessons learned about tobacco cessation from high income countries cannot be simply transferred into low and middle income countries (LMICs) given the vast differences in cultural norms, tobacco products and use patterns and health care and public health systems.

Blogs by people with multidrug-resistant TB

Infographic from MSF

Infographic from MSF: click for full version

One of the sessions at today’s MSF Scientific Day conference is about the MSF’s TB & ME project, a site featuring blogs by people around the world who are undergoing treatment for multidrug-resistant tuberculosis (MDR-TB). The blog provides lots of information about TB and how drug resistance develops, but the focus is on the personal stories of individuals from places as disparate as the UK, Armenia, India, Swaziland and Australia. On the PLOS Medicine blog in 2011, Dr. Phillip du Cros explained the theme of TB & ME like this:

What goes through a person’s mind when they are told they have multidrug- resistant tuberculosis (MDR-TB) and face at least eight months of injections and nearly two years of medication? What are they thinking when they find out that the drugs they have to take will make them feel sick, and the side-effects they will experience could range from severe to life-threatening?

The stigma of having TB can be severe. An infected person must be isolated or wear a mask and in some cases, the weakness of a TB patient can be mistakenly seen as a sign of AIDS. TB & ME has a number of posts tagged with the keyword “stigma” which provide some insight into what it’s like to live with this disease.

The patient experience matters. That seems obvious to those of us with an anthropological mindset, yet it seems that it’s overlooked or disregarded far too often. This project is refreshing and the bloggers are powerful advocates simply by telling their own stories. I wasn’t able to watch the conference session that analyzed the effects of blogging on the patients, but the presentation slides are online and suggest that they felt more empowered, had a sense of solidarity with other patients, were more likely to adhere to the treatment, and that blogging enhanced the relationship between the patient and medical staff. I’ll post a link to the video of the session when it’s online.

MSF Scientific Day live this Friday

Médecins Sans Frontières/Doctors Without Borders (MSF) will stream their Scientific Day conference live at no charge this Friday [watch here].  The conference takes place in London but they have also published a schedule in Eastern Standard Time.

logo_jpeg_newsite

Highlights of this year’s conference include:

  • The keynote speech by international health expert, co-founder of theGapminder Foundation and TED talks alumnus Hans Rosling on the synergy and conflict between research and advocacy. This will be followed by a panel discussion on the impact of MSF’s research.
  • Treatment in conflict and emergency settings including TB in Somalia and hepatitis E in South Sudan
  • New approaches to preventing malaria in Mali and Chad, cholera vaccination in an outbreak in Guinea, and preventing malnutrition in Niger by cash transfer and food supplementation
  • Challenges for MSF including the introduction of a medical error reporting system and parenteral artesunate for severe malaria
  • The role of social media and health looking at the effect of MDR-TB patients blogging about their experiences

Viewers can use the Twitter #MSFSci hashtag to participate during the event on Friday and follow @MSF_UK for more info. The video archive from last year’s event can be found here on Vimeo

Autism Awareness Month-April

Tomorrow starts the first day of Autism Awareness Month, each year the challenge is to find away to light your life up blue. For those who want to know more there is of course a Facebook page:

www.facebook.com/worldautismawarenessday

The official calender day worldwide is April 2nd.

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