Huntington’s disease can affect families differently, with various aspects of your life being impacted as you care for an individual with the disease.
The social impacts of Huntington’s disease (HD) can be significant so it’s important to know how you can be affected and what you can do to ease your situation.
Role reversal in families
Families impacted by HD can experience a reversal in roles due to the change in family dynamics and responsibilities.
This might mean a reassignment of previously recognised roles within the family and can further become an emotional and practically challenging adjustment for everyone involved.
Carers
Caring for someone with HD can often be carried out by a family member, particularly a spouse or young adult children.
Acting as carer for someone with HD provides physical, emotional, and financial support.
However, whilst it is a rewarding role, it can also take an emotional toll on someone’s wellbeing.
As the disease progresses, the primary carer might find themselves juggling multiple roles, from a partner, child, or sibling into a carer and pillar of support.
You might feel feelings of isolation or feel emotionally drained, but it is important these concerns are seriously addressed, and you seek advice from your GP if you are struggling with your mental health.
To combat these challenges, systems such as support groups and educational initiatives are important to be implemented as this will help to increase awareness, foster understanding, and provide a support network for all those affected by HD.
There are also community groups which act as part of the social support available to you if you have been impacted by the effects of HD.
The Huntington’s Disease Association branches and support groups are run by volunteers, where groups meet up and down the country for a mixture of social activities, information sessions, fundraising and, above all, a good talk.
Speaking with other individuals who have been affected by HD is important to do as this will help you to share your worries and understand you are not alone.
Employment and financial challenges
As HD progresses, the symptoms the disease creates can make it increasingly difficult to care for the individual and so care around the clock might further be needed.
This can have an impact on your employment and financial stability so it might be best seeking the expertise of a carer to help ease this challenge.
If you are experiencing financial difficulties, there are many support systems to help including disability benefits or Government assistance programs.
We understand how Huntington’s disease can affect an individual’s family which is why we offer our expert knowledge to help you understand too.
If you would like to know more about how Huntington’s disease can affect your family, contact a member of our friendly team today.