This was a very informative video......thank you!I was diagnosed beginning of 2012 and have been at the transfusion stage now for the past 3 years.The enlarged spleen would (in my case) have to be the worst symptom of this disease but I have very little pain for which I am grateful;it is the daily discomfort I find difficult to deal with.It even affects my bowel,especially after eating. There is no history of blood disease in either of my parents’ families.
Margaret Roselle thank you also Margaret for sharing your story. My mom was just diagnosed with this after suffering from anemia , and has now had 3 transfusions.
debro103 Thank you for your reply,and best wishes to your Mum.I,also,had suffered anemia most of my life,taking iron tablets regularly.Maybe it was a precursor to this disease. I stay as upbeat as possible each day and have learned to accept my diagnosis and to take each day as it comes.It certainly is a very odd condition and seems to have a mind of its own! I did appreciate your reply.
I would like to understand more about the pathogenesis, could you please explain how if the bone marrow is dried, AML can be produced. And when you say there is a defect in the JAK2 kinase, you mean it is constitutively activated? And if is on, the bone marrow isnt supposed to produce more cells instead of drying? Please someone could clarify my doubts.
Great video re the problem but the treatment options is lacking. See interferon and hydroyurea and more recently JAK2 inhibitors. Transplant is problematic but the only real cure at this time.
This was a very informative video......thank you!I was diagnosed beginning of 2012 and have been at the transfusion stage now for the past 3 years.The enlarged spleen would (in my case) have to be the worst symptom of this disease but I have very little pain for which I am grateful;it is the daily discomfort I find difficult to deal with.It even affects my bowel,especially after eating. There is no history of blood disease in either of my parents’ families.
Margaret Roselle thank you also Margaret for sharing your story. My mom was just diagnosed with this after suffering from anemia , and has now had 3 transfusions.
debro103 Thank you for your reply,and best wishes to your Mum.I,also,had suffered anemia most of my life,taking iron tablets regularly.Maybe it was a precursor to this disease. I stay as upbeat as possible each day and have learned to accept my diagnosis and to take each day as it comes.It certainly is a very odd condition and seems to have a mind of its own! I did appreciate your reply.
Nice work!! Many thanks
Nice video thanx alote.
I would like to understand more about the pathogenesis, could you please explain how if the bone marrow is dried, AML can be produced. And when you say there is a defect in the JAK2 kinase, you mean it is constitutively activated? And if is on, the bone marrow isnt supposed to produce more cells instead of drying? Please someone could clarify my doubts.
thank you 🙌
I Think it's a very explanatory video, perhaps i'd rather you focused on pathogenesis also. :)
Anyway, great work!
Great video re the problem but the treatment options is lacking. See interferon and hydroyurea and more recently JAK2 inhibitors. Transplant is problematic but the only real cure at this time.
could you live a long life.
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