Is it worth taking Aspirin, or Aspirin-like drugs, for CADASIL if I have not yet suffered a stroke?
Once CADASIL sufferers have experienced a stroke, we usually start Aspirin, or a similar but slightly more effective drug called Clopidogrel. It is not known for sure which patients with the CADASIL mutation should take these drugs if they have not had a stroke. We tend to treat patients once they have reached the age of 40 or above at which point the risk of stroke is increased. Stroke is fairly rare in CADASIL at age less than 40.
I have CADASIL. Should I take the oral contraceptive pill?
The combined oral contraceptive pill (which contains estrogen and progestogen) is associated with an increased risk of stroke. Even though this is small, we would advise against taking it if you have CADASIL. The mini pill (progestogen only) is associated with a lower risk of stroke and would be a better option if oral contraception is used.
I have CADASIL. Is it safe to take hormone replacement therapy?
HRT for menopausal symptoms is associated with an increased risk of stroke, probably due to a slight increase in blood clotting. For this reason it is better to avoid it in patients who have CADASIL. However, if the menopausal symptoms are very severe, sometimes a decision may need to be made to take it despite the increased risk, but this should be discussed in detail with your doctor.
Is there a UK patients group for CADASIL?
Currently, there is no UK CADASIL patients and families group. This is something we would be keen on helping establish if patients and their families are interested. If that is the case, please do let us know via the contact link on this website.
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.
Should I take L-Arginine?
L-Arginine is an amino acid which we all have in our diet. In the body it is converted into a chemical called nitric oxide, which causes blood vessels to vasodilate (open wider) and this can increase blood flow. It has been suggested that it could increase blood flow in the brain of CADASIL sufferers. It can be bought as a dietary supplement. There is no data from clinical trials to show that L-Arginine does improve the situation in CADASIL and therefore at the moment we would not recommend its routine use. However it would be interesting to examine its effectiveness in future clinical trials.
Can I become involved in CADASIL research?
At The University of Cambridge we have an active CADASIL research programme. We collaborate with other groups throughout the UK who are interested in carrying out research in CADASIL. If you would like to be involved in such research projects in the future, we ask that we see you once so that we can collect all the relevant clinical information. If you agree, we will then hold your details on a database and get in touch with you if there are appropriate research projects in the future. You will then receive details of the individual projects and what they involve, and it will be up to you whether you are interested in taking part in any of them.