Got Essential Thrombocytosis?: Presentation videos available from Women and MPNs conference

Sunday, October 9, 2016

Presentation videos available from Women and MPNs conference

MPN Advocacy & Education International wrapped up its Women and MPNs conference in New York recently. I am slowly working my way through the videos, but especially recommend Dr. Gail Roboz's "How To Be Your Own Best Advocate as an MPN Patient."

Roboz offers some really good questions to ask your hematologist and suggests ways to open up better lines of communications with your doctor.

I hope to get through the videos soon and share some thoughts about the conference presentations as soon as this pesky bronchitis subsides.

Meantime, though, here's the portal page for the presentations. Please do watch some of these and let us know what you found helpful here or on our FB page.

Be well!

Related: Need questions for your doc?

Related: Does your doctor CARE?

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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.

Alphabet soup glossary

AML: Acute myelogenous leukemia. A type of leukemia sometimes developed by a small number of MPN patients.
AVW: Acquired von Willebrand disease. A bleeding disorder caused by extremely high platelet counts. Oral chemo can reverse AVW.
CALR: Calreticulin protein, which is an alternative indicator of ET to JAK2.
CML: Chronic myeloid leukemia.
DVT: deep vein thrombosis. Many patients are diagnosed with ET when they develop a blood clot.
ET: Essential thrombocytosis aka essential thrombocythemia. An MPN typified by too many platelets.
HU: Shorthand for hydroxyurea (Hydrea), still the leading oral chemo for most ET patients.
JAK2: A gene (Janus Kinase 2) in which a mutation (V617F) is present in many patients with MPNs, including ET.
mcL: Microliter. A microliter is the equivalent of a cubic milliliter of liquid, i.e., blood, if you're reading a platelet count.
MF: Myelofibrosis. A bone marrow disease developed by some ET and PCV patients in which the bone marrow has difficulty producing normal blood cells.
MPL: Myeloproliferative leukemic protein. Another indicator of ET, like JAK2 and CALR.
MPN: Myeloproliferative neoplasm. A group of blood diseases of which ET is one.
ODA: Orphan Drug Act of 1983. U.S. legislation designed to encourage research for treatment of rare ("orphan") diseases.
PCV or PV: Polycythemia vera. An MPN typified by too many red blood cells.
SM: Systemic mastocytosis. A type of MPN in which the body produces too many blood cells called masts.