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Genetic testing

Finding out your genetic status

Genetic testing for Dutchtype CAA is possible. A genetic test will conclusively confirm whether you have the genetic predisposition for DCAA. It's up to you decide whether you want to know or not. If you do, your GP is a good start to get information about how genetic testing works in your country.  Sometimes the testing is done when you have your first stroke, because you were not aware of DCAA in your family. The process of testing then might differ from what is described below.

Genetic Testing

The gene that causes Dutchtype CAA was discovered in 1990. Since then it is possible to determine whether you are a genecarrier. The process of genetic testing works differently in every country. In most of them you need a refferal by your GP. The testing process itself takes a few weeks and usually includes interviews with a psychologist or social worker and a geneticist. It is possible to get tested from 18 years of age and upwards and is available for anyone from a Dutchtype CAA family.

The process

You will be guided throught the process by a psychologist or social worker and a geneticist. During initial meetings you exchange information about your personal situation and look at the pros and cons of the decision you are about to make. Based on the outcome you can decide whether or not you would like to continue with the test. 

Blood Test
If you decide to continue with the test, they will draw blood. Two tubes are required to ensure that there is enough DNA in the case of a duplicate test.

It takes roughly 2 months to process the tests, however timelines may differ in different countries. Even when the results are back, you may still refuse to get them. If you do want to know, the result is shared with you in a face to face conversation or by phone. You will be counseled on how to deal with either the positive or negative result and how to tell your family.

Important considerations

The decision to have yourself tested for Dutchtype CAA is not easy. After the test, you will know without any uncertainty whether you have the genetic predisposition for the disease (if you are a gene-carrier) or not.

A favourable outcome will confirm that you do not have the disease and, equally important, also can not pass it on. To most a favourable result triggers a great sense of relief, but it is known that people with a negative results also experience depression and feelings of guilt towards relatives who do suffer from the disease.

An unfavourable result on the other hand confirms that you are a gene carrier. This also means that the disease will reveal itself at some stage – without knowing when, because the development of the disease differs in each patient. The ‘unpredictability’ of DCAA often creates feelings of insecurity and anxiety. However, some appreciate that now they know, it gives them time to come to terms with it and plan the rest of their lives the way they want to.

Remember that it is possible to discuss whether you want to get tested with the psychologist and geneticist, without knowing if you want to continue with genetic testing. It is good to talk to the experts about your mental state and expectations, before you make a decision. They are here for you.