My first career was as a general nurse and I nursed a man with Huntington’s Disease in the UK.
I had little understanding of the disease but was aware of the ripple effect and the immense anxiety it provokes. Nursing this man always stuck with me.
A diagnosis of Huntington’s Disease (HD) is a devastating experience. It is a relatively rare, degenerative disease of the brain first described by George Huntington in 1872.
Symptoms affect motor abilities; posture, uncontrolled voluntary and involuntary movements, sustained muscular contractions, and difficulties with speech and swallowing.
It also affects behaviour and emotions causing anxiety, depression, irritability, outbursts of anger, OCD, Sleep disturbance. It causes the gradual impairment of comprehension, reasoning, concentration and memory.
HD varies from person to person and at different stages of the illness. Life expectancy is approximately 20 years after onset. In the later stage people need support in all aspects of life.
Each naturally conceived child of an affected parent has a 50% chance of inheriting the illness. Approximately 750 people in Ireland live with HD with a further 3000 at risk. Symptoms usually start between 35 and fifty years old. About 5-10% of people have symptoms before age 20 (Juvenile HD) and 10% have a late onset after 60 years of age.
For families living with this hereditary disease, a new diagnosis is heart-breaking. In families with no previous history, the diagnosis seems impossible to comprehend and accept.
This transpired for Anne who was pregnant with her third child when her husband’s mother was diagnosed unexpectedly. When Anne’s husband received his predictive test result three years later, their young family faced a stark reality.
“Prior to his test I was shocked by sudden out of character changes in his behaviour. My once considerate and loving husband appeared self-centred and illogical at a time when our young children required priority. The diagnosis was hard hitting but looking back there were signs before this test result.”
They needed time to process the diagnosis and the implications for their children.
They contacted the Huntington's Disease Association of Ireland to get information.
Next began the process that comes with dealing with shock and grief: denial, anger, bargaining and depression.
“Taking time to come to terms with it allowed us to move forward. Meeting other families through HD Association events was educational, helpful and empowering and also gave us a feeling that we were not alone,” Anne said.
You cannot overestimate the power when in crisis, of talking and being with people who are thinking your thoughts, feeling your feelings and living a life similar to yours.
You are not alone
A few dedicated health professionals in Ireland are liaising with international experts to enhance care and progress research here. Hope is critical and this research and help will assist.
Bloomfield Hospital Services a charity www.bloomfield.ie offer a multi-disciplinary care service.
Contact the Huntington’s Disease Association of Ireland to get information and support. www.huntingtons.ie. National helpline 1800 393939