If you want to learn more about cryopyrin-associated periodic syndromes (CAPS), but don’t know where to go, have no fear! We have found the perfect place for you!
Systemic Autoinflammatory Disease (SAID) Support is a fantastic blog full of information about complex diseases that is actually easy to understand. Part of the Autoinflammatory Alliance, the SAID Support blog focuses on providing support and raising awareness for people living with an autoinflammatory condition and their loved ones.
One of the first places to start when it comes to raising awareness and advocacy is empowering people through education. They have a whole page devoted to education with links to incredible resources!
These sources vary from a CAPS Guidebook, which details all of the different conditions that are part of the CAPS family, to links to published studies where you can get the raw information straight out of the scientists’ mouths!
There are also a ton of great resources for parents. Unfortunately, a number of autoinflammatory conditions affect children. Just look at NOMID/CINCA, another member of the CAPS family.
NOMID stands for neonatal-onset multisystem inflammatory disease, meaning you often see symptoms at birth and the inflammation affects many parts of the body.
Out of all of the CAPS conditions, NOMID is the most severe.
This blog is especially a haven of information and support for those parents. There are cards to take to new doctors to give them a background on CAPS, a booklet that helps children understand and deal with taking injections, and a discussion forum where common questions are answered.
Even better, parents get to see other kids who are living with the same condition as their child, and thriving. Now, if that isn’t giving comfort, I don’t know what is!