Where can I find information on CADASIL?
On this website we hope to provide useful information on CADASIL which is presented in a clear and balanced fashion. There are also links to other sites at which information can be found. There are many sites which have additional information, but in some cases it is not balanced and could cause unnecessary worry or confusion for CADASIL sufferers and their families.
What happens after a diagnosis; should I have periodic reviews? If so, how frequently?
This is up to you and patient preferences vary. If people with a CADASIL diagnosis remain well we often review them, and this can be by telemedicine, on a yearly basis. If they are having problems we would review them more frequently. However, some people who have had a CADASIL gene diagnosis but remain well prefer not to be seen and to just get on with their life. This is an equally reasonable option. If this is the case it is important that you occasionally have your blood pressure checked by your GP and continue to practice a healthy lifestyle.
Can CADASIL cause problems in children?
Occasionally children with CADASIL can develop migraine, but migraine is common in children and young adults anyway. Other than this CADASIL does not produce problems in children.
Is there a UK patients group for CADASIL?
CADASIL Support UK is fantastic charitable organisation and support group set up by those with CADASIL for others with CADASIL and their families. You can find them on Facebook under 'Cadasil Support UK' here and on their website here.