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Living with Huntington’s Disease

Case Study 4
A Negative Result

Case Study 1 | Case Study 2 | Case Study 3 | Case Study 4

B first heard that Huntington's disease was in her family when she was in her late teens and had her first child. She describes what happened: ‘Looking back, it is clear to my father and those who knew my mother, that my mother was in the early stages of Huntington's disease when she married. Hence I never had a "normal" childhood. "Your mother’s mad" was a common statement I remember from schooldays - she died when I was 18. I left home and soon after became pregnant. I was told about Huntington's disease after my son’s birth. Because of the disease he couldn’t be adopted without special permission. The Department of Social Welfare finally agreed to the adoption, provided his adoptive parents told him of Huntington's disease on his 21st birthday.’

She and her three sisters all married and had children. When the predictive test became available her youngest sister took it, and had a positive result. Another sister also took the test with the same result. B did not want to have the test at that stage but went to see a neurologist as a private patient at her own expense. She had no signs of the disease.

She finally decided to take the test when her sons reached an age when they needed to make decisions. The result was negative and the letter telling her adopted son that he may be at risk of Huntington's disease has been destroyed.

The outcome of predictive testing on the family has been significant. B says: My oldest sister refuses to accept her positive test result, claims it is wrong and has isolated herself geographically from us. We are unable to help her. My other sister is actively and enthusiastically following a programme drawn up by her medical advisers/counsellors and works with the Huntington's disease group in her area. My other sister prefers to ignore it all - no test but she writes and is friendly to all of us. My father has senile dementia and as it progresses, his feelings about my mother and the lack of help at the time show his frustration and bitterness about having to battle to rear us four girls on his own, with no family support at all.

One of B’s sons commented: ‘By its very nature Huntington's disease is a family disease, inheritable and shared by siblings from a common parent. In our family this is the single most disturbing factor and the one which has wrenched our family. My two aunts are positive and my mother is negative - the way each responded to HD’s impact has varied.’ He added: ‘As a comment on NZ health services, post-test support is non-existent. On the auntie who is in denial, follow up would have been beneficial (if not vital) and the lack of it has brought about self-isolationism and petty family squabbles. No contact is maintained now.’ B’s son would have liked more questions on how each family member who had been tested responded, not just the one who gave him the questionnaire.

Case Study 1 | Case Study 2 | Case Study 3 | Case Study 4

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