HLRCC: So You've Got a Rare Syndrome that Causes Cancer... Now What?

I was recently diagnosed with HLRCC, hereditary leiomyoma renal cell cancer syndrome. I do not have kidney cancer now, I just have a syndrome that can cause it. Despite the fact that I've had the symptoms for more than twenty years, because this is a rare disease, it went undiagnosed. I wanted to share my story so that maybe if someone out there is dealing with this, they'll have the opportunity to catch it before it's too late.