When my platelet count was rising slowly but steadily over several years, my nagging concern was that the cause was either inflammation or an early sign of cancer (ovarian cancer, which my mom had), which hadn't yet been identified. So, in a way, identifying the gene mutation was a relief: for me that meant the platelet count, in itself, was the problem to treat. With HU500 the numbers started dropping right away -- & so far, so good. Learning that it's a chronic, treatable condition & that the majority live normal lives was obviously also a relief; my primary care doctor said he's had (or has) 20 patients with this & all are doing very well. I'm going to re-read that post by the guy who's had it for 30 years.

Are you tolerating the HU well? It was horrifying to read about all the possible side effects (I imagined having all of them), but I've been very lucky, none at all.

Cheers & much hope to you on your journey!