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Do I have HCHWA-D?

The big question.

It is possible to determine conclusively the answer to this scary, yet all-important question. A medical examination will reveal whether or not you have a predisposition for the disease.

Genetic testing

Since the early 1990’s it has been possible to determine whether someone has the genetic predisposition for HCHWA-D by examining ‘genetic material’. These genetic tests (Hereditary Research Project on HCHWA-D) are done by the DNA diagnostics departments of the University of Leiden’s Medical Centre (LUMC). People experiencing HCHWA-D related symptoms (such as cerebral haemorrhaging) can apply to be tested. The test is also available to members of an HCHWA-D-carrying family even if they are not experiencing any symptoms relating to the disease.

The examination determines whether you have (or the predisposition to) the disease. Additional services include information sessions and genetic counselling (information and support from medical experts).

Now That I Have HCHWA-D?

Currently there is no known treatment available for HCHWA-D and neither are there any short-term expectations of a solution in the foreseeable future. Doctors are able to positively diagnose the disease and scans can provide a relatively accurate indication of the disease’s progression. It is as yet unclear as to what the best way is to manage the disease. For instance, it has never been proven that high blood pressure has any effect on HCHWA-D even though it is always recommended to maintain a healthy blood pressure (of course). 

So what can you do?

Talk about it with our association

The HCHWA-D association is there to bring patients and affected friends and family members in contact with each other - people who are in a similar situation sharing the same fears, have the same questions etc. You can also contact your General Practitioner (GP) if you would like to be referred to a psychologist or specialist physician. We recommend that you at least talk to someone about your doubts and concerns. We speak from experience.