CADASIL Support and Resources


Cautions

Agents to avoid if possible, always discuss with your physician:

cerebral angiography and anticoagulants may provoke cerebrovascular accidents

smoking and hypertension may increases the risk of stroke

Thrombolytic therapy (intravenous thrombolysis) is contraindicated because of the presumed increased risk for cerebral hemorrhage

https://www.ncbi.nlm.nih.gov/pubmed/20301673

Anesthesia awareness

Be sure and share your CADASIL diagnosis with your surgical care team.  It is important for CADASIL patients under analgesia to maintain hemodynamic stability leading to adequate cerebral perfusion. This is  key to avoid an increase in the effects of the chronic arteriopathy patients with CADASIL sustain.

https://www.ncbi.nlm.nih.gov/pubmed/22480557

Medical Terms

For help understanding medical lingo/terminology, see: http://www.medilexicon.com/medicaldictionary.php

Social Networking

The views expressed by others on Facebook, Linkedin, Tweeter and other sights does not reflect the views cureCADASIL.

The official cureCADASIL Association Facebook page can be found here. It is a source of information on events, news, and happenings related to CADASIL.

 

There are other social CADASIL Facebook groups are available. Please keep in mind these groups are independent are not associated with cureCADASIL or monitored by cureCADASIL.

CADASIL Support on Facebook

Open, public group for anyone interested in learning more about CADASIL for any reason. People outside the group can see the members and posts.

 

CADASIL-ians on Facebook

Closed group for anyone touched by CADASIL: patients, families, friends, caregivers, medical professionals, students, and others. People outside the group can see the members in it but cannot see posts unless they are also a member.

 

CADASIL Patients United on Facebook:    Contact Heather Chepko-Albertson for membership — Email: vchepko@gmail.com

Private (“Secret”) group for diagnosed CADASIL patients only.  No one outside the group can see this page, your membership status, or your posts.

 

We Are CADASIL Connected on Facebook

Closed group for friends, family, and caregivers of CADASIL patients.   NO diagnosed patients are allowed in this group so that members can talk freely about their loved ones with the condition.

 

CADASIL “At-Risk” Support Group on Facebook:

Closed group for anyone who has a biological family member with a CADASIL diagnosis but has not yet been tested personally.

NO diagnosed patients are allowed in this group so that members can talk freely about their options and opinions regarding testing…or not testing.