BLIGHTED by its stigma, few people are willing to talk about the devastating effects of Huntington’s disease.
But these four friends, whose lives have all been changed by the hidden illness want to lift the shroud of secrecy.
Feisty and fun, they refuse to be beaten by the disease that many treat like a dirty family secret.
Two of them have Huntington’s disease (HD) – Joan Manchip and Jan McMenemy. Two are carers – Sadie Clark, whose husband has the condition, and Irene Brown, whose son died from it and has children and grandchildren with the gene that causes the disease.
A hereditary disorder that affects muscle co-ordination and cognitive functions, it usually shows itself in middle age and Huntington’s patients eventually need round-the-clock care. There is no cure.
Every child of someone with HD has a 50 per cent chance of inheriting the disease. Family members often decide against gene-testing, preferring not to know if the time-bomb is within them.
For the Huntington’s disease annual awareness week, the four women decided to lift the lid on what has been called Scotland’s hidden illness.
They are members of the Glasgow branch of the Scottish Huntington’s Association and are backing calls for medical professionals to understand the debilitating neurological condition that affects 900 families in Scotland.
More than 200 Scots social workers, GPs, nurses, day care employees, psychologists, psychiatrists and residential staff, are taking part in seven training sessions organised this week throughout Scotland.
Scottish Huntington’s Association CEO, John Eden, said: “It is vital that everyone who works in healthcare knows exactly what Huntington’s disease is, how it affects people and their families, and how to best help them access support.
“There are hundreds of families affected and yet it is still misunderstood.
“Medical professionals can make such a difference to a family’s experience of HD, therefore it is extremely important they are well informed.”
SADIE CLARK, 58
“I’d already had four children before it emerged there was Huntington’s in our family,” said the mum of five.
“James’s family knew but never told anyone until his brother showed symptoms and relatives said they knew what was wrong.
“When I asked why they’d never told me, they said I wouldn’t understand.”
When James tested positive, Sadie vowed to stand by him.
“I was more frightened for my children. They were my priority,” she said. As James’s condition deteriorated six years ago, Sadie became his full-time carer. She has had to endure his symptoms including aggression and mood swings.
“There have been plenty of times when I’ve thought I can’t do it but I remind myself it’s not his fault – it’s not him, it’s the illness,” she added.
Grandmother Sadie has five children and one – her youngest daughter Catrina, 30 – has tested positive for the HD gene, although her siblings have refused the test.
“She has two children of her own but doesn’t have any symptoms yet.
“It’s been good for her to come to the group and meet the older members to discover it is possible to continue living with Huntington’s.”
IRENE BROWN, 74
Adventure-loving Colin joined the Army but was discharged as his health deteriorated.
“He started walking into walls, and became depressed and more argumentative,” said Irene. “He could pick a fight in an empty room but you couldn’t not love him with his blue eyes and big smile.”
Colin was 34 when he was finally diagnosed with HD after suffering puzzling symptoms for more than a decade.
Mother-of-seven Irene tested negative, which meant her ex-husband carried the HD gene.
Her other children had to make the agonising decision whether to be tested to see if they too had inherited the faulty gene that leads to HD.
Blood tests revealed two of Irene’s daughters and two grandchildren had inherited the gene and will develop the condition.
“It’s absolute hell knowing they will get Huntington’s,” she said. “I’ve already had to get over the loss of one child and now one of my daughters is showing symptoms.
“But I remind them you can have 20 years living your life once you start to get symptoms, so live it to the fullest.”
JAN McMENEMY, 64