Thank you vstefans and blmielke! Sorry that I did not see this posting sooner. Thank you for contacting me by email Becca.
This syndrome is considered very rare, with a chance of having a spontaneous mutation for CAPS at odds of 1:1 million! There are people that have inherited it from their parents, so there are some larger family groups with it. Once you have the gene mutation , it is a 50/50 chance that it will be passed on to your children.
We have more info on our website www.nomidalliance.org and a downloadable CAPS guidebook, and other resources. I am mailing some to you Becca this week.