CADASIL is an autosomal dominant condition. This means that if a parent has it, each of the parent's children has a fifty percent chance of having it as well. For many families, this is an especially difficult aspect of CADASIL to deal with. Parents may worry about their children's health and wonder if they should be tested for CADASIL. Patients who experienced the illness of their own parent or grandparent with CADASIL may find it upsetting to think about how the condition will affect them as they grow older. These are normal concerns. You may want to discuss them with your physician, a genetics counselor, or a therapist.
Our view is that it is appropriate and important, at some point in time, for your children to learn of your disease and the fact that it is hereditary. This information may be particularly important with respect to your adult children’s family planning. There is no “best time” to talk with your children about CADASIL, and the decision will depend on many factors such as their age, maturity, and typical psychological reactions to stressful news. Parents often have a better sense of this than do physicians. As a rule of thumb, we feel that the discussion should preferably occur before the start of family planning.