Science & Medicine

One World, One MPN Community

You Can’t Leave Town

This is an exciting time, this is a hard time in the MPN world, one of those times when our horizons open out and our harsh realities close in upon us.  Some of our major scientists and clinical investigators are publicly warring over drugs, over motivations…. Our patient support lists continue their separate, sometimes antagonistic paths… One of our true  patient leaders is suddenly struggling with acute leukemia.

We have successes — promising directions opening in research…The Foundation’s new challenge initiative to fund science.. stem cell transplants that take hold as friends leave their hospital and begin their recovery….Miraculously, neighbors rise from their sickbeds and resume their lives, free of the pain of splenomegaly.

We have successes and we have failures.  The limits of our understanding become apparent as one drug after enough can only hold this blood cancer at bay for a time, can only allay symptoms for a time. The city limits of our world are very clear.

Our MPN world is a small, tight-knit town. Clinical trials in California and Bologna affect  patients in London, Paris, Perth. Public disputes in Minnesota and Florence disrupt therapies in South Africa and New York City.  And the loss of any of us is a loss to all of us. As citizens of this small town we are a tiny band of orphans in a sea of worldwide recession and need, of regional wars and local desperations.

In this environment, we have only each other  — patients, caregivers, and friends — to raise awareness, fund research and support all those efforts that help us survive,  thrive and hope to one day overcome this disease lodged  deep in the corridors of our marrow. We can make our town peaceful and orderly or accumulate garbage in the streets and anger in our hearts.

Either way we can’t leave town since we carry it within us. Together, we are the MPN world.

(Graphic courtsey of

Take me back to the Contents

©, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to with appropriate and specific direction to the original content.

Creative Commons LicenseThe illustrations for by Johanna Kovitz are licensed under a
Creative Commons Attribution – NonCommercial – ShareAlike 3.0 Unported License.

Comments on: "One World, One MPN Community" (3)

  1. Pat Malavasi said:

    newly diagnosed and very scared…i have tried to join some facebook accounts but it seems that people are away who can allow me to join…been waiting to get a 2nd oppinion and that is taking time to get an appointment as well.hmmmmmm whats the deal

  2. Maureen said:

    This is a wonderful call to unity in our MPN “town”. Your words and the graphic cheered me enormously. I think we should post this every time the “my list”, “my territory” ,”me,me,me” pestilience strikes the town.

  3. Barbara Kurtz said:

    You can’t imagine how wonderful the town is. I was on my own from 1968 until the internet was “invented” and made accessible to all.

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