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DiscussionHow did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Replies to "Hi, We recently found out that my 16 yo daughter has JAK2, very rare and her..."
No one has hypothesized as to why I have not had thrombotic problems despite high platelets for 20 years, but since I should have had problems based on family history, but have not, I personally give some credit to 40 some years of organic, vegetarian (lately vegan) food, bike commuting, yoga, & dog walking (ha!) Reading, art, writing and gardening are my go-tos for "lifestyle." If my personality wasn't stress&worry-based, I might have escaped this mutation, but personality is pretty hard to control. Trying qi gong now, as it helps me to breathe deeply. I'd love to read what doctors and other medical folks advise to MPN patients. I hope people chime in with advice they've been given. I know diet is not a big part of many docs' training, so we might have to go further afield to find answers. Anyhow, here I am amongst the beleaguered and frightened, so I have no boasts to make! Best of luck sent your daughter's way!!