|
Upcoming Events
2017
|
United States
---
MPN Women's Forum (experts only)
June 9
Cleveland Clinic
Cleveland, OH
Speakers
Dr. Raajit Rampal
MSKCC
Dr. Aaron Gerds
Cleveland Clinic
Dr. Ruben Mesa
Mayo Clinic, Arizona
September 29
Los Angeles, Ca
Women & MPN
October 26
Atlanta, GA
November 10
Washington, DC
International
Friday, April 28 Melbourne, Victoria
Australia
|
|
|
Coming in next month's newsletter
In the Trenches:
Dr. Kristin Pettit
University of Michigan
An ET Patient Story
|
|
Upcoming Support Group Meetings 2017
|
|
New Jersey-January 9
Idaho-January 10
San Francisco-January 15
Indiana-January 16
New York City-Feb.10
|
|
|
Living in Paradox
January's Blog Post
Trouble Sleeping at Night?
Check Your Sleep Hygiene
Sleep dysfunction is quite common among people living with cancer. Difficulty falling asleep, staying asleep, and restless limbs often become part of living "the new normal."
|
10 Tips for Family Caregivers
7. Be open to new technologies that can help you care for your loved one.
8. Organize medical information so it's up to date and easy to find.
10. Give yourself credit for doing the best you can in one of the toughest jobs there is!
|
|
 |
|
Looking Forward To 2017
All of us at MPN Advocacy & Education International wish all of you a Happy New Year. We look forward to seeing many of you over the course of the year at one of our educational programs planned for 2017.
Please check our website regularly for updated information on the many educational programs scheduled for this year.
|
Dr. Jamile M. Shammo
Rush University Medical Center
Jamile M. Shammo, MD, FASCP, FACP earned her medical degree from Aleppo Medical School in Syria, after which she sought further education in the US, and completed residencies in Anatomic, and clinical Pathology, as well as Internal Medicine at McGaw Medical Center of Northwestern University, in Evanston, Illinois. She then completed a 3-year fellowship in the Division of Hematology/Oncology at University of Chicago.
Dr. Shammo is associate professor of medicine and Pathology, Section of Hematology and Stem Cell Transplantation, Division of Hematology/Oncology, at Rush University Medical Center in Chicago, Illinois, where she spearheads the MDS/MPN/Bone Marrow Failure Program.
|
A Veteran's Story:
Gaining Knowledge and Advocating
I served in the Army during a more recent war. I was diagnosed with Essential Thrombocythemia (ET) in early 2013. My son was only a year old and I had spent two weeks in a VA hospital while hematologists tried to rule out other illnesses. I was put on Hydroxyurea (Hydrea) almost immediately due to the aggressive rise of my platelet count. It was eventually controlled and I was sent off with a permanent Hydrea prescription.
My background in health care and my university education prompted me to research this illness and I learned a lot.
|
Caregiving: What I've Learned
My wife
|
|
 |
|
By Stephen W.
|
|
was diagnosed with ET (Essential Thrombocythemia) in 2007. Since then, her health issues have varied. For several months, she will do very well with little to no problems, and then an episode that has included an ER visit on occasion, will throw us into action mode. Even our children know what is expected of them. We become a caregiving team.
Caregiving has many layers. It requires endurance, listening skills, humility, open mindedness, flexibility, wisdom, empathy, managerial skills, problem solving skills, healthy choices, rest, outlets, support and in many ways, the needs similar to those we care for, except that we have to be willing to be the strength BEHIND the patient.
Read More
|
MPN Advocacy and Education International's website provides a comprehensive list of current clinical trials and research projects, as well as up-to-date news related to myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). Click the information below for the latest.
|
Dr. Siddhartha Mukherjee Supports MPN Advocacy Efforts
Dr. Mukherjee is a Pulitzer Prize-winning author for The Emperor of All Maladies. He is also a world-renowned hematologist, oncologist and researcher. Mukherjee sat down for an interview at the recent award ceremony honoring the 2016 Cure MPN Heroes.
|
|
|
Photo courtesy of Emilio Azevedo
Pictured above, MPN Advocacy & Education International CEO, Ann Brazeau, receives the 2016 MPN Heroes Award from Dr. Siddhartha Mukherjee |
"MPNs have been a somewhat mysterious disorder for a very long time. And for a while, it was so poorly understood that physicians had a hard time understanding what the diagnosis was, how to diagnosis it appropriately, what the sub type was, and how to appropriately characterize that sub type."
Dr. Mukherjee
Click here to read the full interview
|
New MRI Research Shows Promise to Detecting MPNs
According to a recent article in Health Imaging, findings from an experimental model show that researchers were able to effectively identify bone marrow cancer (myelofibrosis) using MRI, which could result in how this disease is diagnosed moving forward. The current diagnosis of myelobibrosis is made through an invasive bone marrow biopsy and histophatology to assess cellularity and reticulin deposition in the marrow.
In 2016, MPN Advocacy & Education International interviewed Dr. Marie Huong Nguyen about similar research being done at the University of Michigan.
(Note Dr. Nguyen has since left UofM)
|
|
|
