You will most likely have strong emotional feelings when the results are given, regardless of the outcome. Many people feel relief at having an answer and disbelief that the answer is accurate. Often people express a feeling of \u201closs of identity,\u201d particularly if the result is different from the one they expected. Frequently people go through a period of regretting past decisions, which they might have made differently if they had known their status with regard to HD. This is particularly true if those decisions were permanent, for example, decisions about whether or not to have children, or career paths. <\/p>\n\n\n\n
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Many people express a sense of isolation, feeling that there are few other people who can relate to their feelings. Participating in an HD support group<\/a> or continued support from the HDSA Center of Excellence can help them feel they are not alone. Some people have difficulty with not knowing when they will first develop symptoms of HD. They, their friends and relatives may wonder if the occasional clumsiness, jerk or emotional outburst is the beginning of HD. An appointment with the HDSA Center of Excellence team (including our neurologist) may help to sort through some of these fears. Feelings such as depression, anger, loss of hope, despair, and severe stress can occur. If these feelings occur, treatment with a psychologist, psychiatrist, or counselor<\/a> can be very helpful. The sense of \u201criding an emotional roller coaster\u201d with good days and bad days is normal. Most people eventually come to terms with their results and use the information to help make plans for the future.<\/p>\n\n\n\n For some people, it is a relief to actually have an explanation for some of the problems they may have been experiencing. Sometimes this information can reduce stress in the work environment. The person with HD may be eligible for job reclassification or benefits. Stress in the family may also be reduced. As with the diagnosis of any chronic illness, the diagnosis of HD can bring feelings of shock, grief, anger, disbelief, depression and loss of control. Professional support and support from friends and family can help someone with HD continue to lead a productive and satisfying life. <\/p>\n\n\n\n This can be the most frustrating result since the at risk individual chose to be tested in order to have a clear answer. <\/p>\n\n\n\n Most people feel extreme joy and relief with a negative result but they may experience a low period following the testing. They may be disappointed that the \u201cgood news\u201d did not bring as many positive changes in their life as anticipated. The problems that existed before the HD testing are most likely still there. Huntington disease is still very much a part of their life. Often there may be a feeling of increased responsibility for caring for affected family members. Often people who have lived their lives feeling they would not live a long life because they would someday develop HD have a hard time dealing with the concept of \u201chaving a future.\u201d They may feel a new pressure to \u201cmake something of themselves.\u201d They may also feel guilty that they will not develop HD when other close family members will, particularly if they are the only family member who has \u201cescaped.\u201d <\/p>\n\n\n\n Check out HDSA’s “Here’s the Deal with Survivor Guilt” video:<\/strong><\/p>\n\n\n\n <\/p>\n\n\nPositive result in a person with symptoms<\/h4>\n\n\n\n
Reduced penetrance result<\/h4>\n\n\n\n
Negative\/normal result<\/h4>\n\n\n\n