Thanks for the quick response! My husband's issue is under control. He goes for testing every few months now. So the HU works for the blood counts, so it is effective. But he seems to always feel tired. Of course, he is getting older as we all are, so it may just be coincidental to taking HU. He finally seems to have the dosage correct, so that has helped with stability. His energy levels have not returned much in my opinion but then again, they may not.
Too bad that it is more likely coincidental. We loved Colorado and I would move back in a second if I thought it would help.
I am just looking for more information on updates for treatments. The CRISPR possibilities are exciting as they may be able to actually reverse this completely. Only time will tell.
Thanks again