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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (490)Comment receiving replies
This is definitely something dwilson could ask the Red Cross about.
I believe she'll be told NO. Having no clue my blood wasn't normal, I had donated blood every 8 weeks for years.
But once I had a diagnosis, the Red Cross told me I could never donate again.
Why? No one knows if it's safe to give blood from someone with an MPN to someone without an MPN.
Within the last year or so, a commenter on this forum angrily reported that he'd contracted ET by receiving blood from someone with ET after his heart surgery. Before his surgery, his platelet count had been normal. Afterwards, it was sky high.
Since nobody knows what sparks MPNs, who can say why that poor man now has ET? The stress of his heart issues? A blood transfusion from someone with ET?
The Red Cross screens donated blood for many things, but not for MPNs.
Knowing it's possible my blood could harm someone, I took myself off the organ donor list too.
By the way, I'm MPL-ET, not JAK2-ET. The Red Cross never even asked me what kind of an MPN I had, just told me it would no longer be safe to donate blood.
Those with PV do have regular phlebotomies; every drop of their blood is discarded.
Replies to "@swalex This is definitely something dwilson could ask the Red Cross about. I believe she'll be..."
@janemc
I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot be transmitted through blood transfusion.
ET is a bone marrow disorder, specifically a type of Myeloproliferative neoplasm. It arises from acquired genetic mutations in a person’s own blood-forming stem cells—most commonly involving genes such as JAK2 mutation, CALR, or MPL.
In particular, the JAK2 V617F mutation is found in the majority of cases of polycythemia vera and in a substantial proportion of patients with ET or myelofibrosis. These mutations develop internally and are not transmitted between individuals.
There is also a growing body of qualitative and clinical research supporting this understanding.
https://my.clevelandclinic.org/health/diseases/24031-essential-thrombocythemia
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@janemc yes I know it would be discarded, the hemotologist is just trying to find some way to get his numbers down a little. The only symptom he is having right now is itching and bruising. He has come to terms with his condition but I haven't. I lost a husband due to liver cancer and I don't want to lose another to cancer. It is horrible to watch someone you love waste away from it. Prayers would be appreciated.