Got Essential Thrombocytosis?: Mayo Clinic wants to hear from you

Monday, August 29, 2016

Mayo Clinic wants to hear from you

The Mayo Clinic is doing a survey of MPN patients and their symptom burdens. Specifically, they're looking at alternative treatments and how patients use them.

This is an international study, so please consider taking the survey here.

Be well!

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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.