HD Awareness Month

May is Huntington’s Disease awareness month. Each year the global Huntington’s community unites during the month of May in a shared mission to raise awareness. We’re sharing some facts and also a book that many years ago raised our awareness of Huntington’s.

Inside the O’Brien’s by Lisa Genova

Inside the O’Brien’s by Lisa Genova is a very human novel. Much like Still Alice, which helped to promote awareness of Alzheimer’s, Inside the O’Briens gives a compassionate look at life with very difficult condition. The novel follows what happens inside a fictional family unit when Boston police officer, Joe O’Brien, receives his diagnosis. Any of Lisa’s novels are an educational treat – she’s a neuroscientist as well as a writer and has that rare combination of skills that bring a very real disease to life on the pages of a fictional novel. You can buy a copy of the book from us by visiting this link.

Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.

The Facts

💙 Huntington’s Disease is caused by a faulty gene in your DNA. If you have Huntington’s it affects your body’s nervous system and can cause changes with movement, learning, thinking and emotions.

💙 Huntington’s Disease is not something you can catch; it is inherited. Ever child conceived naturally to a parent who carries the gene has a 50% change of inheriting it.

💙 A genetic test can find out if you have the faulty gene.

💙 You can live with the faulty gene for years without symptoms, but at some stage you will develop symptoms and it’s not possible to tell when this will be.

💙 Huntington’s disease affects men and women. It usually develops between the ages of 30 and 50 but can start at any. Developing symptoms before the age of 20 is known as Juvenile Huntington’s Disease.

There isn’t a cure, but there are ways of managing symptoms more effectively to improve quality of life. For more information about Huntington’s and to get involved please visit this link. Thanks to @hdauk for the information shared above which we took from their website.

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