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Charlotte Raven tells how HD caused her to ‘lose her identity’

Journalist Charlotte Raven has talked about her experience living with HD in a new memoir.

Raven, a darling of 1990s journalism known for her provocative views and her blistering writing, was diagnosed 15 years ago after discovering her father had the hereditary condition the morning of the 7/7 bombing.

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

Symptoms vary, but may include difficulty concentrating and memory loss; involuntary jerking or restless movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing; and difficulty moving. Symptoms usually first appear between 35 and 45.

“Someone once described HD as a disease of grief, which seems very appropriate,” Raven writes in Patient 1: Forgetting and Finding Myself, as described 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 hereditary condition on the morning of the 7/7 bombings.

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 hereditary condition on the morning of the 7/7 bombings.

“You lose your identity, and part of your humanity, while remaining aware enough to keep up with every loss…

“For me, it started with small, inexplicable absences: car keys, glasses, a million lighters, shoes, clothes. Then I lost the world, city by city. Familiar places became a scary jumble of streets, so I stayed at home.

“Then the car itself started to disappear: once we stopped at services, I could never go back to it.

‘Greater human losses followed. I lost my sexuality. Friends no longer remembered to visit me. And then I started to lose my own past: when my short- and long-term memories were affected by HD, the story of my life faded into the distance and became more and more inaccessible to me.’

The book’s title comes from Raven’s role as “Patient 1” in a groundbreaking drug study investigating the effects of a drug, later called tominersen, that could decrease the production of the mutant huntingtin protein in the spinal fluid.

The trial was finally aborted in March of this year.

Now, 15 years after testing positive for Huntington’s disease, Raven is at a stage where she has to be spoon-fed by caregivers and has trouble swallowing. The times.

Journalist Charlotte Raven

Journalist Charlotte Raven

the memoirs

the memoirs

Journalist Charlotte Raven (left) has talked about her experience living with HD in a new memoir, Forgetting And Finding Myself (right)

But on top of her “daily loss” comes 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 had daughter Anna (17) and son John, who was born two years after Raven’s diagnosis, after much thought by the couple.

Memory loss, mood swings and personality changes: the slow worsening of Huntington’s disease

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

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

Symptoms usually begin between the ages of 30 and 50, but can start much earlier or later.

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

In the later stages of the condition, full-time nursing care is required. It is usually fatal about 15 to 20 years after symptoms begin.

Huntington’s disease is caused by a faulty gene that causes parts of the brain to gradually become damaged over time.

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

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

1 in 2 (50%) chance that each of their children will develop the condition – affected children can also pass the gene on to children who have them

Very occasionally it is possible to develop HD without a family history of it. But this is usually only because one of your parents was never diagnosed.

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

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

Source: NHS

“It took us a long time to decide if we wanted to have another child, knowing that they would have a 50 percent chance of inheriting the gene mutation,” Raven writes.

“But in the end I didn’t want Anna to be an only child, hanging out with weird me and having no one to play with.”

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

Raven writes: ‘People with HD can sometimes seem indifferent and thoughtless… In these situations, the person with HD isn’t intentionally awkward, headstrong, or unkind – their apparent self-centeredness is a result of the loss of mental flexibility associated with with the disease.

“Tom has good reason to believe I was prematurely unempathetic. Our relationship wasn’t loving or collaborative in the first place, so there was little goodwill to draw from when HD came along… My lack of empathy was a death blow to my marriage.’

John now lives with Tom across the street from Raven’s mansion in Kentish Town, north London, but drops by every day after school while Anna, who is studying for her A level, lives with her mother.

Professor Ed Wild, Raven’s physician and a neurologist who leads a research team at the University College London Huntington’s Disease Center who authored Raven’s later book, explained in The Times that HD is “a burden almost impossible to bear.” and many, many marriages end.”

“And when they do, it’s very hard to say anything other than that it’s probably the right thing for both people. It’s a real struggle to care for and love someone when they’re not really the person you met and fell in love with.”

Raven’s colorful personal life made headlines in the 1990s when she began a six-month affair with the famously controversial Julie Burchill.

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

Their lives are intertwined to this day. In 2004, Burchill married Raven’s brother Daniel, 13 years her junior.

Raven, who at one point described himself as a “narcissist with no kindness or empathy,” according to The Times, spent the 1990s “roaming London” and “using drugs.” She’s still on MDMA.

Despite researching Dignitas on several counts, Charlotte continues to look to the future and thank her children for helping her move forward.

“Every day John comes back and we get an infusion of joy because he loves his school so much and he’s a great character,” she told The Times.

“Every day it feels like the bolster is being built to empower me for a future that is better than I expected.

‘I look forward. I have the opportunity to be myself again, that feels like a prize I’ve won.’

Patient 1: Forgetting and Finding Myself by Charlotte Raven was published Thursday by Jonathan Cape for £14.99

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