Huntington’s Disease (HD) is a rare, hereditary neurodegenerative condition. Symptoms include movement, mood and cognitive disturbances, which in the majority of cases appear in a persons mid-adult life – between 30 and 50 years of age. The symptoms of HD may vary in severity, age of onset and rate of progression from individual to individual and between members of the same family. There are currently no therapies that effectively treat the underlying causes of HD, however there are treatments that can alleviate some symptoms and improve quality of life for those living with HD. Currently there is no cure for the disease and effective management is key to quality of life for those who are affected. Patients and families who are living with the disease face multiple social and self-management issues.
Connected Health (CH) has the ability to assist with many of the difficulties faced by HD, rare diseases (RD) and indeed other symptom related diseases. For example, CH can:
- monitor and identify key intervention points along the disease progression pathway
- inform and facilitate integrated care
- assist with joining key stakeholders together in a shared ecosystem
- assist patients and their families in terms of reducing isolation, optimising self-management and thus increasing empowerment and self-actualisation
- optimise scarce resources in an over stretched health care system and thus produce effective and efficient outcomes.