Tools for the MPN Warrior
Having a myeloproliferative neoplasm (MPN) can be a long, lonely and discouraging journey. Patient involvement in MPN education, research and treatment is essential.
Usually a slowly progressing disease, MPN is a blood cancer few people know about. Although some symptoms can be severe, early stages of MPN don’t often have many outward signs limiting sympathetic understanding of patient suffering.
No definitive world poplulation figures for MPN patients exist. Although cases may be under-reported due to lack of diagnosis or misdiagnosis, MPN is clearly an uncommon if not rare disease. Best estimates from the Wiorld Health Organization report prevalence of about 24 per 100,000 for polycythemia vera (PV) and about an equal rate for essential thombocythemia (ET) and 1 per 100,000 for myelofibrosis (MF).
On the bright side is the strong community of MPN patients, caregivers, and advocates. The MPN community has forged a powerful support network on-line and in academia, research labs and nonprofit board rooms.
Today MPN has emerged as a major discipline in hematology research, spawning hundreds of clinical trials, scientific papers and expanded treatment protocols. But the continued scarcity of MPN specialists can require patient effort to gain access to these developments.
Participation in Internet social media is a start. The many Facebook groups devoted to specific MPN phenotpes host more than 100,000 members worldwide. Along with newly diagnosed patients teeming with questions these groups include seasoned patients sharing their direct experriences as well as MPN specialists.
There are instructional videos regularly posted by academic institutions like the Mayo Clinic and MD Anderson. Local seminars hosted by MPN Advocacy and Education And annual meetings open to patients and physicians alike, like the American Society of Hematology (ASH) and Weill-Cornell’s Cancer Research and Treatment bi-annual events. On-line MPN patients and caregivers can find publication of scientific papers and the reporting of organizations like MPNforum Magazine, MPN Voice and Patient Power.
At the center of this activity is the nonprofit MPN Research Foundation (MPNRF) , founded by MPN patient Robert Rosen. Beyond its muti-million dollar funding of basic scientific research exploring the causes and potential cure for MPNs, MPNRF publishes newsletters, monographs, and hosts an online site highlighting clinical trials, breaking research, and patient stories.
One collaborative MPNRF project — with the participation of an international consortium of MPN specialists and patients — has been the creation and developments of MAGIC – the MPN applied graphic internet calculators.