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.

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.

K. was married with one child when she learned that her mother had Huntington's disease. As in other families, her mother became bitter and angry and her behaviour caused all sorts of ructions in the family, who used to cover up for what she was doing. K went to see her GP within weeks of finding out about the predictive test. The doctor didn’t explain to her how Huntington’s really worked and told her she didn’t need to be tested unless she was planning to have more children, so she waited over a year before requesting the test.

She finally demanded to be tested because another health professional told her that her depression and other problems were a result of her mother having Huntington’s. She was annoyed at having all her problems attributed to Huntington’s and wanted to know whether this as a realistic assumption. She also wanted to make decisions about her career and have the knowledge for her child.

She discussed taking the test with her husband and child as well as with some other family members. For years she knew there was something terribly wrong with her mother and kept asking her father to take her mother to a doctor. She was not sure whether her mother had been tested but no one in the family wanted to talk about it. She actually heard about her mother’s condition from a family friend.

K found it hard to get reliable information about Huntington's disease. Health professionals she talked to had heard about the disease but didn’t know enough to help. She eventually found a doctor who put her in touch with the right people who arranged a visit to the geneticist. The visit was supportive and helpful. While some of the information she was given was confusing, she finally knew why her mother’s behaviour changed as she was growing up. She became angry at the family for not dealing with the problem sooner and scared at her own situation. The longer the process took, the more convinced she became that she must have the disease. There were some doubts as to whether and when she would be tested which added to her confusion.

K received good support through the Huntington's Disease Association before during and after the test. K. commented: Dorothy was the only one who called me a few months later. I’d told her I would only call her if I did have the gene. She’d been so good and spent so much time with me. I didn’t want to take up time that might be needed by someone who had a positive result.

 Once she had her result, K reflected on the predictive testing process:

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.

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.

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 of A’s children plans to have children anyway, the other two would like children but would screen them in utero for the disease.

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.