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Mon Nov 18, 2019, 10:25 PM

Woman Who Inherited Huntington's Disease Sues NHS: Another Asks 'Do I Test?'

-- BBC News, 'Huntington's disease: Woman who inherited gene sues NHS,' Nov. 18, 2019.

A woman who was not informed that her father had a fatal, inherited brain disorder has told the High Court that she would have had an abortion if she'd known at the time of her pregnancy. She is suing three NHS trusts saying they owed a duty of care to tell her about her dad's Huntington's disease. Any child of someone with the condition has a 50% chance of inheriting it. Doctors suspected the diagnosis after her father shot dead her mother and was detained under the Mental Health Act.

The father tested positive for Huntington's Disease, which is caused by a faulty gene and leads to the progressive loss of brain cells, affecting movement, mood and thinking skills. It can also cause aggressive behaviour. He told doctors he did not want his daughter told about his diagnosis, fearing she might kill herself or have an abortion if she found out.

50:50 chance: The claimant is known as ABC in order to protect the identity of her own daughter, who is now nine. ABC only found out that her father had Huntington's Disease, a progressive, incurable condition, four months after giving birth..

Read More, https://www.bbc.com/news/health-50425039

- Jackie with her brother Mark.

-- BBC, 'There's A 50% Chance I Have A Fatal; Disease.' If you could see how the rest of your life might play out would you want to? *Jan. 23, 2018. Jackie Harrison has a 50-50 chance of a disease that has killed her mother, uncle and grandfather. Should she take a test to find out whether she will get it too - and could she cope with the result? The BBC's Sarah Bowen has been following her story.

It's rare for a day to pass when Jackie Harrison doesn't wonder if she's inherited the faulty gene that could lead to her developing Huntington's disease, a condition that causes certain nerve cells in the brain to waste away and slowly robs you of the ability to talk, to walk, to move, to think, to swallow. There is no treatment for Huntington's and no cure.

Jackie is 51 and lives in Brighouse, a small, industrial town in West Yorkshire, with her partner of 30 years, Tony, and younger brother, Mark. When Jackie was 12 her mother, Jean, who'd been a teacher, died from the disease at the age of just 48. Her father left the children to be brought up by their grandmother, 78-year-old Edith, who had already lost her husband to Huntington's. Within two years Edith's son, Barry - Jackie's uncle - had also died.

"I've not had a normal life, it's taken everything from me," Jackie says. "I don't know what it's like to have a mum and dad, to have that stability." Jackie wanted to become a teacher like her mum and grandmother, but when Edith died it was up to Jackie to run the house and look after her brother. She got a job and managed to keep a roof over their heads while Mark took his exams at school. Then, when Mark went to university, Jackie was able to work part-time and study herself - gaining a degree and doing a teaching diploma.

But then Mark developed Huntington's and for the past 10 years Jackie has been his full-time carer...

Read More, https://www.bbc.com/news/stories-42627782

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Reply Woman Who Inherited Huntington's Disease Sues NHS: Another Asks 'Do I Test?' (Original post)
appalachiablue Nov 18 OP
Laffy Kat Nov 18 #1
appalachiablue Nov 18 #2
Laffy Kat Nov 18 #3
Clash City Rocker Nov 18 #4

Response to appalachiablue (Original post)

Mon Nov 18, 2019, 10:40 PM

1. That is so very tragic.

It's such a horrible disease.

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Response to Laffy Kat (Reply #1)

Mon Nov 18, 2019, 10:46 PM

2. Beyond words. In reading about this months ago I came across

the work of a prominent scientist researcher whose family has this condition. She's made excellent progress and is devoted to the issue, naturally. 'The thread is finally broken her family.' I'll post the info. if I can find it.

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Response to appalachiablue (Reply #2)

Mon Nov 18, 2019, 10:51 PM

3. Well the article above does have as happy an ending as possible.

Even though neurological diseases are almost always sad, I do find them fascinating to read about.

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Response to appalachiablue (Original post)

Mon Nov 18, 2019, 11:58 PM

4. Yeah, Huntington's is brutal. That's what killed Woody Guthrie.

I read a fascinating biography called “Woody Guthrie: A Life” many years ago. It mentioned that Huntington’s accentuates the mental qualities of the person who has it, and therefore, it may be why Woody was such a prolific songwriter.

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