Testing is ultimately about finding out your CAG repeat—and this can be done with a blood test. But taking a predictive test in order to find out whether you will get Huntington’s disease or not is a huge decision to make in one’s life, and an enormous thing to deal with emotionally. What if a person gets a positive result? Would they be able to cope? Can they live positively with this news? These are questions that have to be asked, and that is why, before anybody can have a predictive test for Huntington’s disease, they should undergo genetic counseling. How long the counseling takes depends on you and your counselor, and your particular personal circumstances but generally it can take anything from 2-6 months. In that time many things are discussed, as one Genetic Counselor explains:
“It’s very much a two way process whereby you can explore the option of a predictive test and what it entails, including the possible test outcomes. There may be discussions around alternatives to testing, possible impact on other family members and the question of timing of the test. It can vary how ready an individual feels to proceed with a test—and that’s fine—we’d want to take it at a pace that feels right for the individual.”
Tiffany, Genetic Counselor
To begin the testing process you usually need to speak with your doctor, who will then put you in contact with your local genetics department. In order to be tested you normally have to be at least 18 years old – although if you are under 18, you can still speak with a genetic counselor about what a test involves and any other issues you may have with regards to Huntington’s disease.
If at any stage during the counseling process you change your mind and do not want to be tested, you can stop the process straight away. Some people even get all the way to having their blood taken and decide now is not the right time for them to hear their results, so they ask for their results to be kept under lock and key until they feel ready to collect them. The doctors and genetic counselors will not read your results until you’ve decided to receive the news.
It Is Your Choice
It is very important to remember that testing is a personal choice – a choice only you have the right to make. Some people in your life may tell you to test or not to test. But it is not up to them at all – it is entirely your decision and you should only get tested if you are sure this is what you want.
There is no right or wrong answer when it comes to making a decision about testing. We all live different lives and we all make different decisions. Some will choose to test (& will vary at what stage in their life they choose to do so), others will not – there are perfectly good reasons for deciding one way or the other. Although it is your decision, you may also wish to discuss your feelings with those closest to you (like a partner) for whom the result will also have a bearing. But ultimately it is your choice.
Emotional Aspects of the Testing Process
Aside from the practical ways to be prepared, testing is also a very emotional process from start to finish. From making the decision to test, going to your genetic counseling sessions, having your blood taken and receiving your result – each stage provides its own emotional hurdles to overcome.
Dealing with the emotions of testing is incredibly challenging for anyone. When you take into account that the whole process can take months, it can become very difficult for a person to maintain their calm throughout. You may have many ups and downs during the process, don’t be alarmed by this, it is quite normal and you should keep discussing your emotions with the genetic counselor (that is what they are there for). You could also seek advice from others who have gone through the testing process for Huntington’s disease already and have faced the same emotions and difficulties.
The Waiting Period
There is a part of the testing process that has not been highlighted yet, ‘the waiting period’. This period covers the time between having your blood sample taken and receiving your test results. People have to wait for weeks in-between their blood being taken and their test results appointment. Just how long that wait is depends on where you live and the clinic you are using. But this can be an incredibly difficult time for a person in the testing process; those weeks can often feel like months! People can become very anxious during the waiting period and it is important to try and stay busy during this time.
If you feel it would be helpful to speak to your genetic counselor during this period do call them (they will not know your result at this stage). Or again, seek advice and support from those who have experienced the waiting period themselves – this can be quite comforting.
Preparing for Your Results
Preparing for results is another challenging aspect of the testing process. Many people tend to develop a ‘feeling’ one way or the other about whether they are going to test positive or negative. Obviously you can’t guess or ‘feel’ what result you are going to get, and these guesses can end up causing more shock when you receive your results (should you get the result you weren’t expecting). It can often be good just to remind yourself during the process that until you test you are ‘at-risk’, rather than trying to guess one way or the other. However, preparing for your results can be useful and during your counseling you may be asked to think about what you will do if you test positive or negative. This is a good exercise because it allows you to really think and plan how you will react to your results, whatever they may be.