The Huntington’s Disease Association has launched its first ever fundraising appeal, Caring for Generations, to support the only dedicated specialist service for people in England and Wales devastated by Huntington’s disease.
Huntington’s disease (HD) is a completely disabling hereditary disorder that affects generations upon generations of families. Each child of a parent with HD has a 50% chance of inheriting the faulty gene; it doesn’t skip a generation, so if a child tests positive they will, at some stage, develop HD.
HD affects each person differently, making diagnosis, treatment and care a chaotic challenge. Some patients endure mainly physical degeneration and dementia. Others suffer from crippling mental illness — depression, paranoia, schizophrenia — while also enduring the spasmodic muscle contractions that twist the face and hands, constantly affecting the patient’s balance and ability to move and speak. The charity the Huntington’s Disease Association describes it as “having motor neurone disease, schizophrenia, Parkinson’s and Alzheimer’s disease all at the same time“.
But there is hope.
With the expert advice, support and guidance of Specialist Advisers at the Huntington’s Disease Association, families gain the tools they need to manage the complex condition and access services to reduce the crippling fear and extreme isolation they often feel. The aim of the charity is to help families stay together for as long as possible, helping them to navigate the complex care, health and emotional needs of HD, and providing the best possible care for patients in their own home.
There are approximately 6,000 people suffering from Huntington’s in the UK. For every person diagnosed, at least another four people are at risk. That’s at least 24,000 people whose lives will, at some point, be turned upside down by the anguish of waiting for a diagnosis, or taking their chances without.
How you can help
You can support these Specialist HD Advisers care for generations of families living with Huntington’s disease via their campaigns page on Virgin Money Giving.