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If I have CADASIL, can I drive a car?

The answer to this question depends on your symptoms. The deciding factor is whether by driving you would endanger yourself and/or other people on the road. Symptoms that can impair driving ability include vision disorders, reduced coordination, paralysis, epileptic seizures, slow reaction times, etc. You should discuss this question with your doctor. You can also take a driving test with a driving simulator offered by occupational therapy..

Is it all right to play sports?

Yes. The best sports for you are endurance sports (e.g., swimming, jogging, hiking). Extreme sports should be avoided. There are no medical objections to taking vacations (including airline flights)

Is CADASIL contagious?

No, you cannot become “infected” with CADASIL. The only possible means of transmission is through genetic inheritance.

My physician has said that I have already had several strokes—but I haven’t noticed anything!

Your doctor’s statement is probably based on MRI or CT images. In CADASIL patients, these tests frequently show small “scars” indicating minor circulation disorders (strokes) that have already occurred. Small strokes, especially early in the disease, can occur without any symptoms.

How good are alternative treatment methods?

So far there have not been any reliable studies of alternative treatments for CADASIL. It does not appear that any such treatments influence the disease process itself. However, we do not actively discourage some alternative treatments such as acupuncture, natural homeopathic preparations, etc. for specific problems (e.g., stubborn headaches) as appropriate in the individual case (for example, relaxation exercises for headaches). However, you should inform your doctor before starting such treatments.

My father/mother who has CADASIL has become severely ill—should I expect the same experience if I have CADASIL?

No, not necessarily. The severity of the disease fluctuates greatly within a family.

Should we have our children tested?

It is generally not advisable for children who are minors to have genetic testing for CADASIL, particularly if they are not showing symptoms of the disease. There are a number of practical and psychological reasons why this is discouraged, the details of which can be discussed with your physician or a genetics counselor. If your child is an adult, you may wish to talk with him or her about your diagnosis and about the fact that CADASIL is inherited. Your child can then discuss this with his or her own treating physician and make a decision about whether or not to have a detailed neurological evaluation including MRI and genetic testing.

Should we talk to our children about the disease and the fact that it is hereditary? If so, when is the correct time to do this?

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.