The iSACRA.org site is now live. Please go to www.isacra.org for our official website. You will find the same content there, and so much more!!
This site will soon be disabled so that all searches point toward www.isacra.org
"Welcome to iSACRA, the international Sacral Agenesis Caudal Regression Association*. As the founder and president of this organization, I am happy to welcome you to this site offering current information, resources, and support for people who have caudal regression syndrome,(CRS) sacral agenesis (SA), and their families. I am, myself, a young person with CRS/SA and we have membership from all over the world. We are excited to see this organization grow." from, Jessica
CRS is sometimes called lumbo sacral agenesis, sacral agenesis, or SA. The word "agenesis" refers to the fact that the some or all of the lumbar and/or sacral parts of the spine are missing-they never formed. That, combined with a few other related physical issues such as the way the legs are formed, or issues with internal organs such as the kidneys, is called "caudal regression syndrome", or CRS, although nothing actually 'regresses'-it just wasn't there in the first place. CRS is the more general term for the condition, even if it is not exactly accurate, while the words sacral agenesis, or lumbo sacral agenesis are specific to the spine only, but these two terms are typically used interchangably.
A syndrome is a combination of related conditions, and this is a rare syndrome. There are estimates that it occurs between 1 in 10,000 births, or 1 in 60,000 births-but no one really knows for sure. It comes in many forms-some mild and some more severe, even fatal. Usually, the condition impacts mobility. In some cases, the lower extremities are very tiny and the legs are fused in a bent 'Buddha" postition, or sometimes a straight position. Webbing between the calves and thighs may be present. Weakness or paralysis usually exists from the point where the spine ends. In other cases, people may only have a small part of the lower spine missing (part of the sacrum), and no paralysis at all. They may even be unaware of their condition until they encounter some issues with kidney infections or difficulty with bladder/bladder control. Many people with CRS/SA have a missing kidney, or horseshoe shaped kidneys. It may seem like this can be a very big deal, and in some ways it is, but in other ways it's not such a big deal at all.
Most doctors have never even seen a person who has this condition, and the information they know about it may be wrong, or outdated. People who have CRS/SA may never have even met another person with this condition. The rarity and lack of information about CRS/SA is one of the things that makes this organization so necessary and important. This site and the iSACRA organization have been created to help people understand CRS/SA and to learn more about it, as well as to connect with others who have the same condition.
The best way to learn about a condition is probably having the opportunity to see and talk to the people who have it. This site is a place to learn about people all over the world who have CRS/SA, or who are parents of children who have CRS/SA, or who just want to know more about the condition. Especially check out our various sections such as "recommended articles", and our very active facebook presence (see 'Our facebook group'). On this site, you will have the opportunity to meet others, and find out about what our lives are like. We aim to present a well rounded picture of CRS/SA, which is a tall order because no two people with CRS/SA are exactly alike.
*formerly the Caudal Regression Syndrome Association
The information on this site is not intended to replace medical advice. Links shared are public and available on the web and photos shared are done so with written permission. Website information is the expressed opinion of the authors based on personal experiences. Every effort has been made to provide accurate and helpful resources.