Huntington’s Disease is a genetic degenerative condition. Long-term, it causes neurological damage and dementia. It is inheritable and first manifests between the ages of 30 and 50. Patients can expect to live no more than about 20 years after a diagnosis. It affects not just the patients, but their families too as they carry out caring responsibilities. For younger patients, those in their 30s and 40s, that means younger carers are usually teenagers. A Scottish Huntingtons Disease Charity called SHAYP (Scottish Huntington’s Association’s Youth Project) has just received lottery money to the tune of £249k to further its work.
Scottish Huntingtons Disease Charity
Established in 2001, Scottish Huntingtons Disease Charity SHAYP helps teenage carers cope with the struggles of living with a Huntington’s patient. It is debilitating and young carers need all the help they can get. SHAYP’s resources and services are crucial. Not only do they provide help and counselling to young carers, but they also organise social events, amongst other things. They also teach them about the condition and the types of struggles they can expect to experience. It’s a support service that helps young people get through their normal day. That’s why it’s so important to the young carers and families of Huntington’s patients in Scotland.
It also serves as a social event, young people supporting each other with difficulties and sharing their experiences. Such sessions are empowering in encouraging them to realise they are not alone. They feel lost and alone because the disease isn’t discussed so much in public outlets. Many of the young service users are in education too – typically GCSE or A-Level age. This means their education is at risk from their caring responsibilities. Even those who aren’t caring for relatives can find disruption to their lives when other family members are required to care for patients.