Science & Medicine

STEP UP AND BE COUNTED

https://goo.gl/forms/NQxX53cXxqV3SRTA2

Where do we get our MPN care? What role do specialists play? How is our therapy impacted? Answer the quick two minute MPN Patient Care Survey and help clarify the picture.

The Survey ends this Wednesday at 5 PM so act now. And thank you, (No identifying data collected.)

https://goo.gl/forms/NQxX53cXxqV3SRTA2

Comments on: "STEP UP AND BE COUNTED.." (6)

  1. Jill saipale said:

    This is the biggest obstacle I have ,I’m sure there are lots of us that just want the best care which in my opinion is an MPN specialist not just an oncologist hematologist ,all mine does is look to see if I need treatment and send me off to the treatment room,I have so many symptoms that leave me to the point of tears ,I want every test ran to make sure there isn’t something else going on. I have taken a trip to Hollywood for a seminar and it was so informative, there was nothing but MPN specialist there but they were so busy after the seminar they couldn’t be bothered😞😩I wish I knew where to start, hopefully we will get help soon I was so happy to take this survey.

    • There are a few places to start, Jill, to get the help you want. It’s patients like you, willing to travel and work to learn about our treatment options, who are the source of so much on-line support for the rest of us. The Dr. Richard T. Silver’s CR&T biannual patient conferences bring together the top MPN specialists in a lecture and workshop format that gives you an entire day of direct information and interaction. http://www.crt.org/ Ann Brazeau’s one day seminars provide a taste of the same at the local levels. For a background and schedule of events: http://mpnadvocacy.com/ I haven’t been to the grand-daddy (or grand-mom) of such events,the Joyce Niblack biannual meetings in Scottsdale Arizona but I have heard only good things about it from passionately satisfied patients. Good luck and keep in touch.

  2. Chris Gunn said:

    I responded to the first post Zhen, it was a great q’aire. To the point, concise, took little time to complete. Looking forward to the results. Thanks, Zhen.

  3. I sure wish I could find a good MPN specialist close by me. My hematologist does not know much and has mislead me in the past as well as regularly showing me she is not very well schooled up on my condition (ET). It’s scary…I have been to 5 other doctors and this is the least scary of the group. Luckily I saw Dr. Verstovsek who she can communicate with but and sudden emergency, etc I am relying on this local, clueless doctor.There needs to be a massive movement to educate hematologists about MPNs I have been a victim of lack of knowledge and a few incidents could have cost me my life.

  4. Kate Rogers said:

    There is no key to the p. Chart!! Or I cannot find it!!

    • True. The Facebook post just didn’t have the space available and this MPNforum post is identical. It might be fun anyhow to guess. There are just four possibilities, ET, PV, MF primary and MF secondary. The segments are roughly the same proportions as the distribution of those phenotypes. July 19 we published the full survey results in the Special MPNforum Science & Medicine issue.

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