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4 Nov 2017

Living with Huntington’s Disease

Case Study 3
A Positive Family Story


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

A first heard that Huntington's disease was in her family when she was in her 30s and was already married with three children. Both her mother and a cousin had the disease.

Growing up with a mother whose health was deteriorating and whose behaviour was unpredictable was distressing. No one in the family knew what was going on, her mother’s behaviour caused all sorts of ructions and the family used to cover up for her as best they could. A was puzzled at the change in her relationship with her mother.

Although A knew for years that she was at risk of Huntington's disease, she didn’t rush to take the predictive test as soon as it became available. Instead, she considered her decision for over a year before finally deciding to take the test for a number of reasons: her children were getting to the age where they needed to make decisions about their lives; she herself was at a point where she had to make decisions about her own career; and she could no longer stand the uncertainty. She wanted to be able to get on and plan her life.

She talked to her husband, all three of her children, her father and her in-laws before deciding to take the test.

A’s husband accompanied her throughout and she obtained all the information she needed through the Huntington's Disease Association. For most of the process, A had no expectation one way or the other about the result, but immediately before she received her result, she thought, perhaps hoped, it might be negative. In fact her result was positive, she is carrying the gene.

Both A and her husband were satisfied with the predictive testing process. A was glad that she had gone through it but receiving a positive result was like being ‘kicked in the guts from top to toe’. She felt sadness, grief, guilt and relief but no anger, only acceptance. Her husband felt sadness but also some anger as well as acceptance. Unlike his wife, he felt no guilt, no relief and no grief.

Two years later, after making changes in her life A’s feelings are still the same except that she also experiences joy as she makes the most of every day. Two years later, her husband still feels some anger and sadness as well as relief. He now accepts the situation but feels neither joy, grief or depression about it.

Over the last two years, both A and her husband have realised that Huntington's disease is only one obstacle in life and that their life has not changed as much as they had expected. A now appreciates life more and thinks more deeply about things. Both she and her husband try to keep their minds and bodies healthy and active and neither of them have any regrets about the choices they have made. A only thinks occasionally about Huntington's disease, her husband thinks about it about once a month. Because A is older, financial matters are not such a concern but she does worry about her insurances and superannuation while her husband sometimes feels sad for lost opportunities.

A’s relationship with her immediate family changed very little before and after the test. The only change was that a family that was already close and affectionate with few secrets became even closer, with the final secret removed. She and her husband agree that the family is supportive, don’t dwell on negatives, and deal with problems straightaway. They have always been reluctant to show anger in case they upset someone.

Since A has had her result, she believes the family can talk with each other better, spend more time together, have different priorities, take more risks, make firmer decisions and appreciate each other more. She accepts that there’s no use being angry at the disease - it is better to just take what comes and get on with it.

With her wider family, A distinguishes between her own family and her in-laws. The latter are more supportive towards her and A describes them as caring, and really interested in her well-being. Her husband agrees that the wider family as a whole is not necessarily close or able to talk, nor do they get together to discuss their problems.

Both A and her husband agree that it is better to know whether you are positive or not than not know and it is certainly not the worst thing that can happen. She is doing all the things she wanted to do in life before her health deteriorates.

A’s three children are young adults now, in their 20s. Two are single and one is married but has no children. All three children grew up knowing that Huntington's disease was in their family and that they were, at that time, at 25% risk. A discussed taking the test with them and they knew what was involved but none was present during the process.

When A got her result, her children had similar reactions. All three felt sadness and none experienced joy, two felt anger and grief as well as acceptance. One also felt depressed, one felt some guilt and the third experienced some relief.

Two years later two still feel sadness and one still feels some grief. Two have become more accepting, one has not. Guilt, anger, grief and depression have disappeared as the children have got on with their lives. The children only think about Huntington's disease occasionally or when something happens to remind them abut it.

All three children appreciate life more and recognise that Huntington's disease is only one obstacle in life. None wish they had made different choices in life and all three feel they had enough opportunity to make their views known. Two of the children think their lives have been changed by the knowledge that they are at risk of Huntington's disease; the third does not.

One child worries about the financial aspects of Huntington's disease, about superannuation and obtaining insurance. Two children think they might be lonely as they get older but try to keep fit and healthy. Both make more definite decisions than they used to. All three children worry about what it will be like when their mother becomes emotionally and physically dependent. One of A’s children plans to have children anyway, the other two would like children but would screen them in utero for the disease. The children’s view of the immediate family matches that of their parents very closely - they also experience it as close, affectionate and supportive with a positive view on life and a willingness to deal with problems. They like the information and support they receive from their mother and the close connection between family members is obvious.


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

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