@uscshawk,

I'd like to invite @nhectasia, @visnja, and @mwk092680 who you posted to in the Coronary Arter Ectasia discussion.

While they may not have been diagnosed with the more rare Giant Coronary Artery Ectasia variety, they may still have some general experiences to share with how they managed both physically, but also the mental aspects of being diagnosed with a rare heart and blood health condition.

@uscshawk - you mentioned many of your providers have not only not seen this conditions, but have not heard much about it. Are you able to work with your current providers to get a referral to a more specialized medical facility that may have more experience with this rare condition? How are you currently feeling physically and managing the stress of uncertainty around your condition?