I’ve had ET for many many years. I have no gene mutation, having had an extensive panel of genetic tests. My symptoms are largely fatigue and night sweats, but I’m lately noticing a new symptom: numbness in fingers on my left hand and top of my left foot, so that’s my story. Happily, my platelets have remained low enough to not compel using Hydroxyurea, only 81mg aspirin —and I’ve had no “episodes” (strokes, clots or heart issues).
You described noting about your husband’s ET issues, so I’m not clear about what support you’re seeking.
Wishing your husband and you good health.