About ET

Essential thrombocytosis is a pretty rare condition in which your bone marrow produces too many platelets. According to info from the MPN Research Foundation, there are about 134,000 of us ET patients in the U.S. at any given time. If you live in a hick town like me, you're not likely to know anybody else with ET. If you live in an average sized American town, there might be eight other people who have ET, about the right size for a book group, holiday decoration committee, or a crack team of international jewel thieves.

Most of us with ET are diagnosed in later middle age. About 60 percent of us are women.

A lot of people with ET are asymptomatic, or the symptoms they have don't seem worth mentioning. Mine didn't. I was tired all the time, but figured I was just gettin' old. Some symptoms are over at the right on this blog, but you should ask your doctor if there are others you might experience. Be aware of your own symptoms and report changes to your doctor.

ET is usually the result of a spontaneous genetic mutation that occurs for reasons doctors don't understand. A small percentage of patients inherited ET and have what is called "familial essential thrombocytosis." (My dad had ET, but so far the jury's still out over whether that's the kind I have.)

ET is in the family of myeloproliferative neoplasms (MPNs). It is incurable. And, yes, it is a type of cancer. (I'll pause for a moment for everyone to calm down over the C word.)

But, as your hematologist has probably been quick to point out, ET is not a death sentence. It is treatable, and those who get proper treatment and monitoring can usually live out their normal life span. Sometimes ET requires a blood thinner to reduce clot risks from the high platelet count. Sometimes platelet counts are reduced using oral chemo. In a very small number of cases, ET may develop into full-blown leukemia, so it's important to see your doctor for regular check-ups.

Things you can do to help yourself include exercising to keep your circulation going (walking and biking are good). Getting to a healthier weight may also reduce clotting risks. You can also try to fight the fatigue by eating a healthy diet, de-stressing, and getting good sleep. Some sites encourage patients to avoid caffeine, but I'm hanging onto my last vice as long as I can.

Be well!

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