Welcome to the CADASIL website

 

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.

 

 

News

 

Cambridge CADASIL Meeting 2022

The Cambridge CADASIL Meeting took place on Thursday 3rd November 20222, it was our first in-person meeting since 2019 and our ever hybrid meeting! Thank you to all our speakers, everyone who joined in person and from around the globe on Zoom! 

If you missed the event, don't worry as you can catch up on all the talks from the day here!

 

 

New European Academy of Neurology Guidelines

The European Academy of Neurology has recently published recommendations for the diagnosis and treatment of familial diseases affecting the small blood vessels in the brain including CADASIL. A group of experts including patient representatives met together to produce these guidelines which provide useful information on how to diagnose and treat CADASIL and other similar diseases.

 

The guidelines are available here, and Professor Hugh Markus outlines some of the points covered in the guidelines in a video which can be accessed by the following link.

 

CADASIL and COVID-19

We have had a number of enquiries 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 (info@cambridgestroke.com).

 

With best wishes and we hope you do stay safe

 

The Cambridge CADASIL team

 

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 contact: mmh64@medschl.cam.ac.uk. For non-research related queries please email info@cambridgestroke.com. 

 

 

New Research Opportunity! 

We are looking for healthy volunteers to help out with our new research project at Addenbrooke's Hospital, Cambridge. This project will help us to understand more about fatigue after stroke and in small vessel disease. 

Please find poster and contact information here. We look forward to hearing from you!