Huntington’s Disease Awareness Month
Huntington’s Disease is a genetically inherited neurodegenerative disorder, with no cure. It’s a progressive disease, typically starting with behavioural changes, followed by uncontrollable movements, a loss of coordination, and cognitive decline. As HD reaches later stages, the triad of cognitive, motor, and behavioural changes become so severe, they require a full-time caregiver, which is often a family member.
Many of you may already know all of this. What many won’t know is how it truly feels to live with Huntington’s Disease. The day-to-day life becomes disrupted, simple things, which were second nature, now become an insurmountable task. The financial and emotional strain it places on personal relationships, with a future that becomes clouded by uncertainty. Only those who have experience of HD truly understand how it feels, which is why it is so important we listen to them.
At Galen these are the stories we are searching for when we interview patients. It is their words that form the items in our questionnaires, so that when one of our Quality-of-Life measures is used in a study, any changes in the score reflects a true meaningful change.
May has been a busy month for us, with two need-based quality-of-life questionnaires now complete, three conference abstracts accepted and four papers pending publication, Galen alongside the HEALTH-E RND consortium have been working hard to ensure that the lived experience of HD patients and caregivers are at the forefront of future research.