May is Huntington’s Disease Awareness Month. This year the national organisations that support people impacted by Huntington’s disease across Ireland, England and Wales, Northern Ireland and Scotland, have joined together as the Huntington’s Disease Alliance UK and Ireland. Family members from each region are sharing their stories and contributions in the collective ‘Family Matters’ campaign. In this blog the UK and Ireland Alliance, highlights the impact of Huntington’s Disease on the whole family and the need for a family-focused approach to care.
Huntington’s disease is a hereditary and degenerative brain disorder which significantly reduces life expectancy. Huntington’s affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate the body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Although encouraging worldwide research is taking place there is, at present, no cure for Huntington’s disease. However, many of its symptoms can be managed with a combination of medication, multidisciplinary therapies and appropriate support from specialist services.
The majority of people with Huntington’s disease develop movement disorders, but symptoms also include psychiatric problems and cognitive difficulties. Most people develop symptoms in mid-life, although around 10% develop Juvenile Huntington’s disease symptoms before the age of 20, and another 10% have late-onset disease with symptoms emerging after the age of 60. Typically, symptoms gradually get worse over 10 to 25 years. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.
Recent studies suggest Huntington’s disease has a higher prevalence that initially reported with 14-16 per 100,000 affected in the UK and Ireland. It is believed that misdiagnosis, stigma and a poor understanding of the disease contributed to lower numbers being reported previously.
The Huntington’s Disease Alliance UK and Ireland (the Scottish Huntington’s Association, the Huntington’s Disease Association Northern Ireland, the Huntington’s Disease Association of Ireland and the Huntington’s Disease Association) has developed the Family Matters campaign which launched at the beginning of May 2021. A campaign survey has highlighted the devastating impact of the disease not just on the individual who has been diagnosed, but for the whole family. It has also highlighted that the community feels there is extremely limited public awareness of Huntington’s disease, with a lot of people having experienced stigma.
The Family Matters campaign also invites those who have experience of Huntington’s to contribute pictures, words and thoughts to a shared digital community space, called the Living History Project.
The organisations behind the campaign have heard many stories of families feeling that the healthcare professionals they see lack knowledge and insight into the trials they face, which means there can be practical barriers to accessing the support that is needed. While it is recognised that for most healthcare professionals in primary health care services they may rarely encounter Huntington’s disease, there is no doubt that greater awareness and understanding would help families feel less isolated. Healthcare professionals working with affected families are encouraged to take a family focused approach and consider the psychological burden on the symptomatic person, the family members living at risk, and the family care givers who may be required to support more than one family member over generations. The Family Matters campaign hopes to promote an improved understanding of the unique pressures of the disease upon the families it affects.
For more information please visit the individual Huntington’s Alliance members websites and hdfamilymatters.org.