HUNTINGTON’S disease (HD) is a condition that is not immediately recognised by most people, and for many decades this relatively rare, progressive neurological condition has languished in a vacuum of silence and secrecy.
We live in a profoundly disability-negative society, so an illness that can cause severe mental ill health, profound changes in behaviour, a type of dementia, severe physical disability and which confers a 50 per cent risk of your children inheriting, is something many, if not most families, tend to hide and so they carry an enormous burden of shame, secrecy and fear.
For generations, children growing up in families affected by HD have lived with the responsibility of caring for a profoundly ill parent, while witnessing their own potential future. There is no cure for this disease yet, and the care, treatment and support of people with HD has often been deeply lacking.
The psychosocial impact is enormous.
On average the person with HD has to give up work within one and a half to two years following diagnosis, and their carers within just two years after that; a double impact on the financial wellbeing of a family. So, it is no surprise that 67 per cent of people with the condition live on less than the average national wage and 33 per cent in poverty.
Relationships come under enormous strain as a result of the personality changes verbal and physical aggression are particularly difficult. As many as two out of three relationships will not survive the 15-25 year span of the condition, it can often mean that people living with HD are isolated and sometimes vulnerable.
If it were possible to capture the stories of the families who live with this devastating illness, they would fill volumes of books and describe heart-breaking tragedy, incredible compassion and breath-taking courage. The stories would also tell of a community, national and international, working together to combat this condition by driving forward the search for treatments and the improvement of care and support.
Today, in Scotland, the care of people living with Huntington’s disease is a testament to that hard work. Families started the only charity in Scotland dedicated to improving care for people living with HD – Scottish Huntington’s Association – and families continue to lead this passionate and caring organisation. The charity has embraced the principal that HD impacts profoundly on the lives of every member of a family, and it now provides services for people with symptoms, carers, as well as people living with the genetic risk. No two individuals are affected by HD in the same way, and so services are delivered in a very person-centred and flexible way with a focus on maximising quality of life and this approach makes a real difference.
Hope, in the face of Huntington’s, is essential and the development of treatments is gathering pace. The prospect of disease modifying drugs is moving from the realm of aspiration to the horizon of possibility, and is now no longer a matter of if, but when. In the meantime, so much can be done to ensure that families are well connected to support and services and enjoy a good quality of life.
Judith Scott has a family member with Huntington’s disease. Learn more about HD and the work of SHA by visiting Scottish Huntington’s Association
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