← Return to Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

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@pixiesusan

I have been diagnosed with CCUS, too. I don't really know anything about how genes are affected, and I'm not sure knowing would change anything. I've had low blood platelets since 2014; however, no one caught it until years later (and I have a physical every year). I'm now going, once a year, to Dana Farber in Boston, and I guess with some recent gene changes, they now call it CCUS. I feel like it's a matter of time before I get MDS or worse. I want to connect with others to see how they are doing and see what if any, symptoms you have. I have very low blood platelets and am constantly exhausted.

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Replies to "I have been diagnosed with CCUS, too. I don't really know anything about how genes are..."

Welcome to Connect, @pixiesusan. When you have an uncommon diagnosis it can be so helpful to be able to talk with others with similar condition. As you’ve already seen, @audreyl23 @j68eis @mlarneson and @thipley have been sharing their experiences in the forum. I hope they’ll be able to help you out with your questions.
You mentioned your platelet level runs low and you’re constantly exhausted. Is your hemoglobin also on the low side?