Should I Get Tested
(This is a personal choice)
There are numerous psychological and emotional consequences of genetic testing and it may be helpful to consider these before one goes through the procedure. It is important to bear in mind that if you have a predictive genetic test for CADASIL and you are found to be a carrier, that does not mean that you have CADASIL but you will have an increased risk of developing the condition in the future. The results from genetic testing could provide reassurance and relief from uncertainty, particularly in cases where not knowing presents its own challenges.
However, it is possible that if one is found to be a carrier of the disease, this could lead to worries about what the future may be like. This can sometimes lead to feelings of depression or anxiety. Feelings of guilt have also been reported in the research literature in cases where people are found not to be carriers of the disease. This is often in the context where one or more siblings have been found to be carriers of the disease while others are spared. The genetic nature of CADASIL means that it is not possible to control who will and won’t inherit the disease. Following a test, it is common for there to be a period of adjustment as you come to terms with the result and what it means for you.
Experiences have shown that the process of genetic testing itself is associated with feelings of anxiety among individuals and their families. The anxiety is often triggered by anticipation of waiting for the results. It is often helpful if an individual arrives for testing with a close friend or relative to accompany and support them.