Welcome to the CADASIL website; a resource for those diagnosed with CADASIL, their relatives and carers. As CADASIL is a rare condition, little reliable information is available on the internet. On this website we hope to be able to provide up-to-date and accurate information. We hope that the website will expand over the coming months and years and would welcome input from patients and family members. In addition to providing useful information for CADASIL patients and relatives we also supply links to other websites where more information can be found.
The information on this website has been primarily provided by Professor Hugh Markus, Professor of Stroke Medicine at the University of Cambridge and Consultant Neurologist at Addenbrooke’s Hospital, Cambridge and by Glen Brice, Genetic Counsellor from the Clinical Genetics Department at St George's Hospital, London. Together, we have been involved in caring for CADASIL sufferers and their families for many years and have a wide range of experience in dealing with the problems associated with the condition.
As with any medical condition, we do rely on hearing the experiences of patients and family members in order to develop new services which better cater to the needs of those affected. If you have any suggestions for improvement to the website or new sections which you think we should add, please do contact us.
We have had a number of enquires on this topic by our patients and families. Here is the best guidance we have for CADASIL patients wondering how it affects them.
Having the CADASIL gene does not mean you are at high risk if you are well and do not have symptoms. However if you have neurological complications of CADASIL such as stroke, disability, or dementia then you are at high risk.
The Association of British Neurologists has provided some advice for patients with neurological disease, which applies to CADASIL and can be accessed here. They will continue to update it on their website via this link.
If you have questions we will always do our best to reply via the info CADASIL email
With best wishes and we hope you do stay safe
The Cambridge CADASIL team
Cambridge CADASIL meeting 2019
The third highly successful CADASIL meeting was held on Monday 10th June at the Clifford Allbutt Building Lecture Theatre at Addenbrooke's Hospital, Cambridge. The first session focused on the cognitive and behavioural aspects of CADASIL with a guest talk from neuropsychologist Alexa McDonald featuring discussing highly useful strategies for coping with these problems, and a presentation from medical student Sam Moore highlighted our increasing understanding of the problem of fatigue in CADASIL and the need for future research.
Professor Markus and Jessica Walsh gave an update about ongoing research work, before CADASIL Support UK trustees Karen and Chops Carter gave talks about the stages of coming to terms with CADASIL and the excellent work of the charity. The final session included a discussion by genetic counsellor Heather Pierce about if and when an unaffected family member should be tested, disspelling some of the myths about testing. Phil Jones gave a personal and very well-received talk about his experience with CADASIL and the insights gained from tracing the family tree back several generations.
For further details on our event and to download the slides, please click here.
Participation in research
We would like to take the opportunity to remind you that anyone who is interested in participating in our research (either as a CADASIL patient or as a healthy volunteer) would be very welcome to get in touch. If you would like to sign-up to be contacted about research, then please let Amy Jolly know by emailing firstname.lastname@example.org or phoning 01223 348401.