Essential thrombo ... whatsis?

A fellow "orphan" with another rare disease, CPS (carbamoyl phosphate synthetase), recently mentioned that she carries around a fact sheet about her condition because not every health care provider outside of her specialist has heard of it. If you don't educate them, she noted, they can't treat you properly.

I thought the fact sheet was a great idea, and promptly decided to swipe it and recommend it to you!

If you want something ready-made, you can download the info from any of the helpful links at right. You could personalize the sheet by jotting down your last platelet count and other blood numbers that are "off," circle the symptoms you have and medication you're taking, indicating dosage and frequency.

The only downside I can see to that plan is that some of these pages may be a little out of date because ET researchers are finding new info all the time. For example the CALR genetic mutation was just discovered a couple of years ago, and that isn't mentioned in some of the info. Plus most of the resources are multiple pages, and most health care providers aren't going to read something that extensive.

So, using my obsessive organizational control freak powers, I've developed a one-page template you can crib from and personalize:

Name:
DOB:

My hematologist is: You may want to include your hemo's phone number and location
My last visit was: 

I have essential thrombocytosis: Include a brief definition of ET that you've put together from the many helpful links at right or from the sample below:

Essential thrombocytosis (aka thrombocythemia) is a rare blood cancer in the myeloproliferative neoplasm (MPN) family. Approximately 130,000 people in the U.S. have ET.

ET patients present with a high platelet count for which there is no secondary cause. sometimes a positive test for mutations in the JAK2, MPL, or CALR genes confirms the diagnosis. Patients who test negative for all three genetic mutations may be diagnosed with a bone marrow biopsy.

ET is incurable, but frequent monitoring and medication can help manage the disease.

Blood clots (or sometimes bleeding) are the most common problems for ET patients. ET, in rare instances, "morphs" into a more severe MPNs or full-blown leukemia.

I was diagnosed ... Include the date your disease was confirmed and how, whether by genetic test or bone marrow biopsy. You may want to note whether you are JAK2, MPL, or CALR positive or negative.

Incidents of blood clots and bleeding episodes. Include the dates of any incidents. Be sure to note whether you have ever taken warfarin (Coumadin) for a clot and for about how long.

My last platelet count was ... Include your platelet count, date it was drawn, and any other blood levels that are abnormal as a result of your ET.

My ET medications ... List frequency, and dosage of any medication you take for ET. Some ET patients take over-the-counter supplements like Resveratrol. These supplements have not been proved effective in managing ET in humans. But if you're taking them, your health care providers should know about them.

My symptoms are ... Be sure to note if you have an enlarged spleen or liver.

Once you've developed your fact sheet, carry it with you and, maybe more important, give it to whomever has your medical power of attorney so that they can provide info in the event you aren't able to speak for yourself.

Be well!

Related: Need questions for your doc?

Related: About ET

Home