It was a bad night. No reason to elaborate, we’ve all had them…or worse. Bone pain, ribs, leg cramps, broken sleep. But this one ended differently.
Toward 4 or 5 AM, I guess, recovering from a threatening calf cramp I stretched out suddenly and launched Katerina, my cat who had settled to sleep on my leg, toward the ceiling. Untangled from the twisted blankets I hobbled to a chair for support.
Feeling pain and despair, I tried to walk off the cramp and find Kat to apologize.
No cat in sight. No surprise, even I didn’t want to be around me.
I limped to the kitchen, sat down to massage my leg and drink a glass of water. My dark mood deepened. Eventually, I went back to bed. Kat probably returned to her filing cabinet.
Still in winter dark, I finally woke up and started the day, opening the curtains, turning on the coffee, brushing my teeth. I took my cup of coffee back to bed and started rehearsing the day ahead, still sore, tired and discouraged.
And then I saw it. Rainbows on my bedroom door and dancing behind it a feathered tuft of rainbow light. Instantly, I was delighted, the display of color and the playfulness, the lightness of the dancing feather was such an unexpected gift it lifted my heart.
There’s an antique lamp in my living room, hung with crystals, some missing, a few broken. It had never happened before so it must be a winter angle of the sun at dawn. Reason didn’t dampen my joy at the event. Rainbows on my bedroom door!
Our vision of light, the kaleidoscopic spectrum, is put together in some coherent state by our brains. Sunlight is made of a natural continuum of color from before red to beyond violet. This combination is seen by us as transparent brightness. When refracted by moisture in the air or a crystal on a lamp the colors return to their natural separate components.
So why share all this under the heading Drop the D?
In our myeloproliferative community, the official designaton of our diseases was changed to myeloproliferative neoplasms by the World Health Organization more than two years ago. Without other change in clinical condition or prescriptive medication our MPDs became MPNs. Understandably the change caused some confusion at first and resistance.
This year, two of our largest foundations switched their names from MPD to MPN, one of the patient support lists made the change as well. This magazine launched under the N and never had to shed the D. But international patient and professional conferences are still being billed as MPD events and, worst of all, many pre-eminent hematologists frequently refer to MPD conditions.
In a world where we are so few, one of the least of orphan diseases, we are in clamorous contention with many families of highly populated medical conditions that are recognized – funded, and researched – by millions of our neighbors. We can’t afford to remain divided.
Where so few ever heard of myeloproliferative neoplasms how can we suddenly slip an MPD into the conversation without evoking confusion if not outright exasperation.
What’s this got to do with rainbows and cats and cramps? Stretching it, I could say that, like the rainbow, our many strands of clinical state, nationality, personal disposition etc. can all come together in one powerful phenomenon of light…or break apart into divisions.
Mostly though, making the case for us all to switch from D to N to help raise consciousness and research funding is a dry enough appeal. I thought a little cat and dog and rainbow and cramp might help make the case.
Please, do your part, drop the D.
Back to the contents, please
© Zhenya Senyak and MPNforum.com, 2011. 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 Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.
Comments on: "Drop the D…or else" (4)
Your view of the world is always thought provoking. May there be more rainbows ahead.
i must admit I still use the D. I asked my Doctor what is going on with the D and N. He replied the change to N was marketing :) Many Docs including mine still like the D. I will try to start using N. But I am old school so change is slow on my part.
It looks like we have no choice to 2drop the D”. I think the N is unfortunate, though. Check a definition of 2neoplasm”:
To use a synonym, then, we now call our diseases “Myelo Proliferative Proliferation”. Hopefully the providers of research grants have a bit of humor
I would like to support Zhen’s call to raise the flag for “N”.
The WHO definition and reclassification of MPDs to MPNs has propelled our disease (previously lingering in the obscure world of the undefinable), into the high profile cancer world where 1) funding for research is more available, and easier to get, as funders will finally understand what the heck a proposed project is about 2) more medical specialists will take notice and join the blessed few clinicians and researchers who are currently interested in our disease 3) raising the public profile of MPNs will be easier – and if you don’t think this is important, check out the history of funding, research, and treatment for breast cancer (those Breast Cancer Action gals knew what they were doing).
In my professional career, I have seen the power of making a change to correctly label a disease – research, increased services, and treatments follow. I am thinking of, for example, HIV/AIDS, HPV, and even H1N1.
Hurrah for WHO and our MPNs!