Being at risk for HD affects different people in different ways. Some choose not to think or talk about their at-risk status, even to the point of shunning other family members. Others think constantly about being at risk and about the possibility of developing HD. This can have an insidious influence and may lead to behaviour which is impulsive or self-destructive. Still others are able to find a balanced approach to their at-risk status and approach decision-making in this way.
Being at risk for HD influences major life choices such as marriage, family planning and carreer decisions. It can also have a pervasive influence on every day activities. An episode of clumsiness, twitching or forgetfulness, such as everyone experiences from time to time, may be seen as a potential symptom of HD and can take on nerve-racking significance.
Many people come to accept the uncertainty of being at risk for HD, especially in the absence of an effective treatment or cure for the disease. Indeed, faced with the choice, most prefer to live with this uncertainty rather than taking a pre-symptomatic test, which could remove hope by confirming that they will develop HD.
For others, genetic testing for HD offers a chance to end the uncertainty and to gain information which they believe will enable them to make informed choices about the future.