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Living with Huntington’s Disease

Case Study 1
Living With a Positive Result

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

C was married with children when she learned that Huntington's disease was in her family. Her mother’s personality began to change and she became bitter and angry. The family had no idea what was wrong and were distressed by the change. When Huntington's disease was diagnosed they realised that other family members were also affected.

C decided to take the predictive test as soon as she heard it was available. She wanted to know her status so she could plan her future. Other family members were also keen for her to take the test. Indeed, the whole family, including C’s husband, parents, children, sister, cousins and in-laws discussed the testing process. C’s mother had already been diagnosed and her sister already had her results.

C and other family members thought the whole testing process was too drawn out. C found the visit with the psychiatrist confusing because the reason for the visit was not clearly explained. Her husband and a support person came with her to the appointment but did not sit in on the consultation and were therefore not able to offer her support.

C’s fears were confirmed when her GP gave her a positive result. She felt sadness, anger, grief and depression. She still feels those emotions, although the depression has receded, and she thinks about Huntington's disease every day. Going through the process has changed her life and although she may appear to be coping on the surface, she is still struggling with her feelings. She worries about the physical, emotional and financial aspects of Huntington's disease and is sad that the family won’t have the luxury of planning for retirement. The family has different priorities now and do still think about things they won’t be able to do.

The news has not necessarily brought the wider family closer together. C notes that some branches of the family have chosen to ignore help and information given to them about Huntington's disease, preferring the old ‘skeleton in the closet’ approach, perhaps hoping that by hiding from it, it will go away. She sees Huntington’s as a family disease and believes they are denying their children the knowledge they need for their futures. Yet other members of the wider family do not even know about the disease. While C is close to her in-laws, she is careful when she talks with her own extended family. C is pleased she knows her status but that doesn’t make the disease any easier to bear. She points out that her own children are at risk but will have to live with that knowledge for years before they will be old enough to take the test which is an added pressure for her.

C’s husband was also sad at the result but was relieved that the wait was over. He accepted the news and continues to do so. Going through the process has made him appreciate life a bit more and think more deeply about things. He realises Huntington's disease is only one obstacle in life and only thinks about it when something happens to remind him. Like C, he worries about the financial aspects of having Huntington's disease in the family and thinks about what it will be like when his wife is physically and emotionally dependent. In the meantime, he keeps fit and healthy so he can look after her and makes firmer decisions than he used to.

He doesn’t think there have been any changes in the immediate family as a result of C taking the test - the family is and always has been close, affectionate, open, supportive and practical. As far as he is concerned, there’s no use being angry about Huntington's disease. It’s just a matter of taking what comes and getting on with it. His wider family has also remained close and supportive.

C’s father has had to cope with his wife’s illness and the fact that both his children have positive results. While he too realises the disease is only one obstacle in life, he is understandably upset by the outcome and thinks about Huntington's disease every day. Like his daughter and son-in-law, he worries about the financial aspects of the disease and feels sad for lost opportunities. His retirement was not the one he planned and he anticipated that his later years would be lonely. His wife died recently and he has since remarried, filling the void he thought he was going to have to face. This, and his continuing involvement with support groups, helping others, have helped him cope with the effects of the disease.

Having a family member go through the predictive test did not change his family patterns. He still thinks it is better to know than not know and accepts that Huntington's disease is not the worst thing that can happen. However, the disease still makes him angry and it is hard for him as a carer to sit back and watch.

Throughout the testing process and after receiving the result, C and her family have been supported by the Huntington's Disease Association and have valued that connection.

C. is not sure what an appropriate age for testing should be. She points out that her own children know they are at risk but will have to live with that knowledge for years before they will be old enough to take the test

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

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
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