Charlotte Rave tells how Huntington's caused her to lose her identity

Nineties journalism darling Charlotte Raven who had an affair with Julie Burchill tells how Huntington’s disease has caused her to ‘lose her identity’ and led to the end of her marriage in new memoir

  • Charlotte Raven, 52, was diagnosed with Huntington’s disease 15 years ago
  • The journalist learned her father had the degenerative condition in 2005
  • Led a colourful life as a controversial writer and had an affair with Julie Burchill
  • She tells in a memoir how Huntington’s has ravaged her life – and her marriage 

Journalist Charlotte Raven has spoken about her experience of living with Huntington’s disease in a new memoir.

Raven, a darling of Nineties journalism known for her provocative views and blistering writing, was diagnosed 15 years ago, after discovering her father had the inherited condition on the morning of the 7/7 bombings. 

Huntington’s disease (HD) is a degenerative neurological condition, inherited from a person’s parents, that stops parts of the brain working properly over time. 

Symptoms vary but can include difficulty concentrating and memory lapses; involuntary jerking or fidgety movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing; and difficulty moving. Symptoms typically first present between 35 and 45.  

‘Someone once described HD as an illness of mourning, which seems very apt,’ Raven writes in Patient 1: Forgetting and Finding Myself, as featured in the Guardian. 

Journalist Charlotte Raven, known for her provocative views and affair with Julie Burchill (pictured together in 1995), was diagnosed 15 years ago, after discovering her father had the inherited condition on the morning of the 7/7 bombings

‘You lose your identity, and some of your humanity, while remaining aware enough to keep a tally of every loss… 

‘For me, it started with small, unexplained absences: car keys, glasses, a million lighters, shoes, clothes. Then I lost the world, city by city. Familiar places became a scary tangle of streets, so I stayed in the house. 

‘Then the car itself started to go missing: when we stopped at services, I could never find my way back to it. 

‘Bigger human losses followed. I lost my sexuality. Friends stopped remembering to visit me. And then I began to lose my own past: as my short- and long-term memory were affected by HD, the story of my life receded into the distance and became increasingly inaccessible to me.’

The title of the book comes from Raven’s role as ‘Patient 1’ in a pioneering drug trial examining the effects of a drug, later called tominersen, that could lower the production of the mutant huntingtin protein in the spinal fluid. 

The trial was ultimately aborted in March this year. 

Now, 15 years on from testing positive with the Huntington’s condition, Raven, is at a stage where she needs to be spoon-fed by carers and has problems with swallowing, according to The Times.


Journalist Charlotte Raven (left) has spoken about her experience of living with Huntington’s disease in a new memoir, Forgetting And Finding Myself (right)

But on top of her ‘daily tally of loses’ is the end of her marriage to Tom Sheahan, a film director.  

Sheahan and Raven were introduced at a party in Notting Hill in 2002 and went on to have daughter Anna, 17, and son John, who was born two years after Raven’s diagnosis, after much consideration by the couple.

Memory lapses, mood swings and personality changes: The slow deterioration of Huntington’s disease 

Huntington’s disease is a condition that stops parts of the brain working properly over time. It’s passed on (inherited) from a person’s parents.

It gets gradually worse over time and is usually fatal after a period of up to 20 years.

Symptoms usually start at 30 to 50 years of age, but can begin much earlier or later.

Symptoms of Huntington’s disease can include: difficulty concentrating and memory lapses; depression; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing; difficulty moving.

Full-time nursing care is needed in the later stages of the condition. It’s usually fatal about 15 to 20 years after symptoms start.   

Huntington’s disease is caused by a faulty gene that results in parts of the brain becoming gradually damaged over time.

You’re usually only at risk of developing it if one of your parents has or had it. Both men and women can get it.

If a parent has the Huntington’s disease gene, there’s a:

1 in 2 (50%) chance of each of their children developing the condition – affected children are also able to pass the gene to any children they have

Very occasionally, it’s possible to develop Huntington’s disease without having a history of it in your family. But this is usually just because one of your parents was never diagnosed with it. 

There’s currently no cure for Huntington’s disease or any way to stop it getting worse.

But treatment and support can help reduce some of the problems it causes.

Source: NHS

‘It took us a long time to decide whether to have another child, knowing they would have a 50 per cent chance of inheriting the gene mutation,’ writes Raven.

‘But ultimately I didn’t want Anna to be an only child, coping with weird me and having no one to play with.’

Over time, Huntington’s took its toll on the marriage. 

Raven writes: ‘People with Huntington’s disease may sometimes seem uncaring and thoughtless… In these situations, the person with HD is not being deliberately awkward, wilful or unkind – their apparent self-centredness is a consequence of the loss of mental flexibility associated with the disease.

‘Tom has good reason to believe I was prematurely unempathic. Our relationship wasn’t loving or collaborative in the first place, so there were few reserves of goodwill to draw on when HD came to call… My lack of empathy delivered a mortal blow to my marriage.’

John now lives with Tom down the road from Raven’s townhouse in Kentish Town, north London, but comes over every day after school while Anna, who is studying for her A-levels, lives with her mother. 

Professor Ed Wild, Raven’s doctor and a consultant neurologist running a research team at the University College London Huntington’s Disease Centre, who wrote the afterward to Raven’s book, explained in The Times that HD is ‘a burden that is almost impossible to bear and many, many marriages end’.

‘And when they do, it’s very difficult to say anything other than it’s probably the right thing for both people. It is a real struggle to care for a person and love them when they are not really the person you met and fell in love with.’   

Raven’s colourful personal life made headlines in the Nineties when she embarked on a six-month affair with renowned controversialist Julie Burchill. 

Burchill at the time was married to her second husband, Cosmo Landesman, whom she ultimately left for Raven. Together Raven and Landesman had co-founded the high/low pop culture magazine Modern Review with the journalist Toby Young.  

Their lives remain entwined today. In 2004 Burchill married Raven’s brother Daniel, 13 years her junior.

Raven, who describes herself as at one point being a ‘narcissist without kindness or empathy,’ according to The Times, spent the Nineties ‘swanning around London’ and ‘taking drugs’. She still takes MDMA today. 

Despite researching Dignitas at various points, Charlotte continues to look towards the future and credits her children with helping to drive her forward. 

‘Every day John comes back and we get an infusion of joy, because he loves his school so much and he is an amazing character,’ she told The Times. 

‘Every day it just feels as if the bolster is being built to reinforce me for a future that is better than I could have expected. 

‘I am looking forward. I have the possibility of being myself again, which feels like a prize that I have won.’ 

Patient 1: Forgetting and Finding Myself by Charlotte Raven is published by Jonathan Cape on Thursday at £14.99 

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