Welcome to AVM Survivors Patient Support Community!
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
This is an online support group for patients, friends and families affected by AVM.
An AVM (or arteriovenous malformation) is a congenital defect in the circulatory system, a malformation between an artery (or arteries) and a vein (or veins). There are other types of vascular anomalies that are similar to AVMs, such as cavernous malformations (CMs), venous malformations (VMs), or developmental venous anomalies (DVAs). If you have any of these, you are more than welcome here. If you have an aneurysm, you may wish to join our aneurysm community.
Some AVMs are hereditary, due to genetic conditions such as CM/AVM, HHT or Cowden Syndrome, and Cavernous malformations may also run in families. It is possible that all AVMs are due to genetic or inheritable factors – we don’t really know yet.
AVMSurvivors.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But AVM Survivors is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
Visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. Thus your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
AVM Survivors is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and Blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well-informed about the state of medicine and research.