MPNforum Magazine

A flipped coin has two sides to land on, an interesting face up on the obverse side and a dull apathetic tails up on the reverse side. It’s the same with the future of MPN issues and coins are being flipped even as I write this. On this early spring morning in Tallahassee I want to write about the coins that landed with their faces up.

I realize that there’s more than one person reading this whose pain and
suffering fills their days with dispair and their future seems dark
and hopeless. However I do not believe that a cheerful attitude
wrapped in legitimate hope can worsen their distress else I would not
muse about these things . This is not a time for brooding over the
dull and dismal flip side of our MPN lives. Let us forego and forget
the pallid statistics of flipped coins and see that  there’s a much
greater than 50% chance for us to be facing a brighter future
concerning MPN issues.

Daylight saving time is here and the longer days allow an extra hour
of sunshine for me to enjoy the glorious camellias, azaleas and dog
woods in bloom. It’s not a day for negatives so I won’t write of mean things, disagreements, mistakes and errors in judgement that sometimes mar our support conversation.

To count the petty and inconsequential as worth writing about this morning would be to discount and stubbornly ignore all the good things
happening in our MPN world now and for the foreseeable future. I truly
believe that if we will think positively and call “heads” instead of “tails”  the obverse will turn up and  we will begin to recognize that we are already winners in our present struggles with MPN.

To digress, we are told over and over that “we are all different.”  So true in so many ways, but re MPN, are there really different
etiologies for different MPNs or is there a final common genetic
pathway leading toward a single disorder with many twists and turns?
I understand a little about there being different genes for red heads
than for blonds, but several different causes for several different
MPNs?  I wonder. Maybe the differences in all MPNs are merely
variations on a familiar theme. As they say on the Lists, “my
opinion.”

But if it should turn out to be true will a single most effective method of managing MPNs emerge? I hope so because when there are multiple therapeutic approaches in separate centers of expertise
there is no one best way and somebody is probably wrong. The naysayers
will insist that we aren’t quite sure that the coin won’t land flip
side up and things will remain the same. I hope not because in the
present state of MPN affairs, different appraisals of and approaches
to our MPNs by a small yet different group of experts in different
centers makes flipping a coin to tell us where to go is a 50/50 gamble
for a good or bad outcome.

MPN might not be such a rare disease after all  –perhaps far more common than we realize, way more unseen than recognized.There’s no doubt that the word about MPN is getting around as the amazing knowledge about it by patients and caregivers owing to the internet, spreads into the media and then into the general population.

Many of our relatives, associates and friends are becoming aware that youdon’t have to look sick to be sick. In the aggregate, the publicity alone should lead to fairer funding. As with other diseases, many people die not knowing they ever had a MPN. Perhaps more death certificates will include MPN as coroners and incidental physicians insist on reviewing the deceased medical records before certifying the cause of death.

Long before the arrival of personal computers and the  internet when
my knowledge of genetics was mostly about fruit fly wings,

I studied the pioneering hematology of Roy Kracke, Max Wintrobe and William Dameshek as well as other luminaries of their time. The early trails they blazed led to the need for MPN research and the necessity for funding it. This is happening, internationally.

William Dameshek

Will there come a day in which every doctor and medical professional is aware of MPN in all its serious vicissitudes not only as a chronic disease to be lived with, but also as a progressive neoplasm?  An era when MPN is recognized early and treated prudently and competently with state of the science evidence based medicine provided with empathy and attention to contextual and holistic elements?

Will there be MPN care available in every patient’s hometown, backed up by the experienced expertise of a regional medical facility.  A time when financial worries and stress are no longer cardinal symptoms of the disease?

When it is finally understood that no matter how secure we seem to be financially, whether self made or from inherited deserts all of us are potential medical indigents who must depend on outside help. It just depends on what disease(s) we suffer and how long we’ve had to pay for being caught up in the presently broken American healthcare system. This is not a political position –it is a fact.

Though our MPN future remains somewhat tenuous and uncertain there are many positive signs for better care and management of MPNs. The
scientific advances are chronicled in MPNforum in readable in-depth
reviews of the literature backed by personal interviews by our widely
experiencd editor. There are articles of help and guidance colored
with optimism by contributors who ‘have been there.’  It’s been said
that “you can’t know where you’re going if you don’t know where you’ve
come from.”  The readers of this magazine have been given an
exhaustive, fair and accurate look at the advocacy lists that preceded
the newer and more in-depth forum/magazine style.

There are many other signs of progress in understanding MPNs

They not only come about owing to a better balance of funding for basic MPN research, but also from a variety of newer concepts for gathering and processing massive amounts of data with hitherto unavailable

An example is 23andme. Employing the science practicalities of 21st Century research capabilities in well-equipped laboratories and world class investigators, 23andme is successfully demystifying our personal DNA for us and removing our fears of seeing its proper place in MPN research as well as in preventive medicine. (I wasn’t one of the firstto see its value and purpose.) Elsewhere some of the basic research has already graduated from lab to clinic and the resultant effective therapy from mice to men.

Many mice and too many of we humans have been lost along the slow but inexorable trail toward a cure, but we must never forget that they did not fail themselves or us. They did NOT lose a valiant fight with MPN rather they gave us a clearer clinical view of MPN
–Information that widens our perspective and informs and
guides research laboratories.

All in all we have reason to be optimistic this gorgeous Spring
;morning.  The way forward will be rocky and unpaved, but its ruts are
clearly visible. Heads up, y’all.

Best,  Arch

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© Dr. Arch M. and MPNforum.com, 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 Dr. Arch M. and MPNforum.com with appropriate and specific direction to the original content.