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Inside the minds of torturers

WHEN Françoise Sironi was 6, her grandfathers met for the first time. One was Italian, the other from the French frontier region of Alsace. She remembers the conversation turning serious, then being mystified when the men fell weeping into each other’s arms. They had discovered they fought in the same first-world-war battle – but on opposite sides. The incident sparked a lifelong interest in what drives ordinary people to extraordinary acts. She became a clinical psychologist and, in 1993, helped found the Primo Levi Centre in Paris to treat the victims of torture. She is now an expert witness for the International Criminal Court in The Hague, specialising in assessing those accused of crimes against humanity or genocide…

This article first appeared in New Scientist on 12 July 2017. To continue reading, click here (paywall).

On death and glaciers

IN September 2013, I came home from the Italian Alps and asked my husband if he thought that, as a science journalist, I’d be covering the science of the First World War for the next four years. I had just attended what was surely the last funeral for unknown soldiers fallen in that war. There were two of them, and they lost their lives in a little-known episode of the conflict called the White War, in which Italians and Austro-Hungarians struggled for control of those mountains at altitudes exceeding 3,000 metres. Global warming had since shrunk the glacier in which they had been entombed, in a crevasse, and their remains had melted out the previous year…

This blog first appeared in Frontiers on 1 June 2017. To continue reading, click here.

 

 

Who names diseases?

REMEMBER the Naples Soldier, the vicious flu pandemic that swept the globe almost 100 years ago, infecting one in three people and killing up to 50 million? You probably don’t, but you might remember the Spanish flu, the name by which that pandemic is better known. ‘Naples Soldier’ was what the Spanish called it, after a catchy tune that was being played in local music halls at the time. They knew the origins of the disaster lay beyond their borders and, understandably, refused to take the blame…

This essay first appeared in Aeon on 23 May 2017. To continue reading, click here.

“I’ve always thought I’d be good at naming diseases,” muses Dan Piepenbring in The Paris Review (24 May 2017). “The problem with most disease names is that they have all these scary words in them: flu, disorder, virus. That’s bad for business. If I were in charge, I’d name them after deodorants (Aqua Reef, Cool Burst, Sport) or Yankee Candles (Bahama Breeze, Vanilla Cupcake, Clean Cotton). But get this: It’s not just one person naming all the world’s diseases. It’s a whole committee of international bureaucracies, which explains why so many of our world’s most dangerous illnesses have such lousy titles.” Read Dan here:

I Can Name Your Disease, and Other News

The Pope and Huntington’s disease

FRANKLIN Soto will develop Huntington’s disease (HD), a lethal genetic disorder that causes progressive mental and physical deterioration and for which there is no cure. His two sisters already have it. His wife died of the disease last year, and his three-year-old daughter has a 75 per cent chance of developing it.

Franklin’s was among a number of South American families who travelled to Rome this week for an audience with the Pope. The Pontiff thus became the first head of state and major religious leader to mention HD, which is thought to affect nearly one million people worldwide. The actual prevalence of the disease is unknown, because families often hide it, and are forced to live in fear and isolation far from the treatment and support they need.

The irony is that it was families from Lake Maracaibo who contributed to the research that led to the identification of the gene responsible for HD in 1993. As a result of that breakthrough, a diagnostic test now exists that means that those at risk can determine whether or not they will develop HD. If they carry a mutation in the gene in question, they will certainly do so, but usually not until middle age. This allows them to make informed decisions with respect to parenthood, to gain access to specialist treatment, and to plan for the future – all options that were unavailable to Franklin.

Hence HDdennomore, as the initiative to bring the South American families to Rome was called. The brainchild of former war reporter and HD advocate Charles Sabine, organised by an international team of HD clinicians and scientists, and funded in part by drug company Teva – which is conducting research aimed at developing new HD therapies – its goal was to lift some of the stigma attached to the disease.

“We all very acutely feel the debt that is owed to those families in Maracaibo,” said Ed Wild, a neurologist and HD researcher at the National Hospital for Neurology and Neurosurgery in London.

“You are precious in God’s eyes, and you are precious to the Church,” Pope Francis told the families. The organisers hope that this message, uttered by the head of the world’s largest non-governmental healthcare provider, will mobilise efforts both within and beyond the Catholic community to provide better care for those affected, while giving patients and their relatives the courage to come forward and be counted – and to continue to take part in clinical research.

We all stand to benefit from their participation, since HD shares disease mechanisms with other, more common neurodegenerative diseases, such as Alzheimer’s and Parkinson’s. That research could therefore lead to drugs that will help the one in three of us who will likely develop dementia in our lifetimes.

This was not in the Pope’s speech, however. He merely called for more compassion towards those suffering from HD and from all rare, genetic diseases – words that have been a long time coming, but that needed to be said.

This article first appeared on the Catholic Herald website on 19 May 2017.

The tantalising truth about twins

MY godson George, aged eight, is a non-identical twin. He’s not alone. That’s not a gag from #kidswritejokes. He obviously has his twin William to keep him company, not to mention their younger brother Henry who, as George put it, “would have been a triplet if Mum hadn’t put him in a special fridge”…

This article first appeared in The Telegraph on 5 August 2016. To continue reading, click here.