About that high LDH and enlarged platelets (and more) ...

Global Handwashing Day. It's a thing! It was October 15.
But EVERY day can be handwashing day. And should be
if you have ET. 

Sunday I met with five other folks in my area to ask questions about ET blood tests and research.  Dr. Robyn Scherber, MPN expert from the Mayo Clinic, spoke to us by phone for about half an hour. MPN Advocacy &Education International (link at right; please check it out!) sponsored the meeting and the call with Dr. Scherber.

I've been puzzled by two things that show up in my bloodwork, and if you have ET, you've probably noticed it too. I asked Dr. Scherber about high LDH (lactate dehydrogenase) levels and the exciting news that "enlarged platelets detected" now appears on my CBC. Randomly googling these things will scare the hell out of you because you may think you're in liver failure or that your platelets have stopped working.

This is not the case.

ET group forming in Michigan; questions for the experts?

MPN Advocacy and Education International (see their link at right) will host an MPN patient support session October 23, 11-1 p.m. at Gilbert and Blake' in Okemos, Michigan. Please make this session if you can!

An "MPN expert" is promised (live or via phone). If you can't attend but have questions you'd like me to take on your behalf, please post them on our Facebook page.

Not sure if this group will be ongoing or is a one-off, but am excited to meet in person with others in my area who are in the same boat.

Will have a full report (and maybe photos!) after the event.

Be well!

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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