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Essential thrombocythemia

Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)

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@kjg47

Hi Tessa

My mum was diagnosed with ET when she went to routinely donate blood. She was probably in her early 30s when she received her diagnosis and went on to have a third child naturally in her early 40s. She does not carry the Jak2 gene. She is now 75 and only recently started to experience poor health as hers has progressed to myelofibrosis in the last 13 months. I'm afraid I don't know all the ins and outs but I'm learning right now. Even though my mum isn't great at the moment and it's likely too late for a bone marrow transplant to be effective she has been able to live a full life. I just wanted to share this to hopefully inspire and learnmore about ET from what everyone knows this group is experiencing.

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Replies to "Hi Tessa My mum was diagnosed with ET when she went to routinely donate blood. She..."

I'm so sorry your mom is dealing with MF. Guessing she has the CALR or MPL gene if she is JAK2 negative? The up-side is that there are newer drugs approved to control MF that insurance will pay for. Hopefully her doc is on top of that or she can get a referral to an MPN specialist.