International MPN News, Science & Opinion

MPNclinic — The Press Release

Seven Top Hematologists Help Patients Fight Rare Leukemia in a New, Free, On-line Service

 

NEWS

 July 10, 2012….There’s a leukemia so rare – about five cases per one million  persons – that chancesare you never heard of it or met anyone suffering from it.  Most family doctors and even many hematologists have never seen a case.  To help serve this patient population, seven leading hematologists from prestigious medical institutions are expanding their Internet presence.

 MPN Clinic — Bringing doctors to patients

Myeloproliferative neoplasms (MPNs) are blood cancers, officially classified a rare disease by the National Institutes of Health.  Because MPNs are so rare —  and testing and treatment options so complex– patients cannot easily find professional healthcare support in their communities. They are often required to travel long distances for expensive evaluation and treatment.  As a result, MPN patients and their caregivers worldwide frequently rely on the Internet as a primary source of information.

Since it is difficult for many patients to get to specialists, MPNforum Magazine, the Internet monthly published by an MPN patient collective, offered to help bring the experts to patients via MPN Clinic, an on-line roundtable. The first physicians to volunteer for MPN Clinic’s roundtable —  leading scientists, professors, and specialists from some of the world’s most renowned  medical centers — are rarely seen together outside of international hematology conferences:

 The roundtable

The initial roundtable includes Dr. Richard Silver, (Weill-Cornell,New York), Dr. Srdan Verstovsek, (MD Anderson, Houston), Dr. Ruben Mesa, (the Mayo Clinic,Arizona), Dr. Claire Harrison, (Guy’s andSt. Thomas,London), Dr. Jason Gotlib, (Stanford Medical Center,Palo Alto), Dr. Ross Levine, (Sloan Kettering, NYC) and hematopathologist Dr. Attilio Orazi, (Weill-Cornell).

How the MPN Clinic works

      Patients, caregivers and healthcare providers e-mail MPN questions to the Project Coordinator at  MPNclinic@gmail.com.  Questions are forwarded to the full panel.  Each doctor responds to one or more questions and those responses are circulated among the physicians for review and comment.

     The final version –questions, answers and comments — appears in the monthly MPN Clinic section of MPNforum Magazine and is archived in a searchable, publicly available  on-line database. Responses are immediately forwarded to individuals submitting the question.

The first  MPN Clinic report will be published September 15, 2012, however  responses to questions have already been received and forwarded to patients in the US and England.

 MPNs and Myelofibrosis

Myelofibrosis is one of the myeloproliferative neoplasms (MPN). The MPNs are a blood cancer caused by one or more mutations, usually acquired after middle age although increasing numbers of younger adults and even children are starting to be seen with the disease.  The MPNs are differentiated by the blood line that is over-producing due to the disruption of normal hematopoeisis (blood production). The chronic forms of MPNs are characterized by overproduction of red blood cells (polycythemia vera) or platelets (essential thrombocythemia). Under care, many of these patients may live normal life spans with minimal suffering.

An acute form of MPN is myelofibrosis (MF), a debilitating and sometimes fatal leukemia. In MF, the blood producing environment in the bone marrow capsule is constricted by collagen fibrosis causing a drop in blood counts, bone pain, intense fatigue, and loss of appetite as blood production and storage moves to the spleen and liver crowding the stomach and other organs.

So far, the only cure for MF is a challenging stem cell transplant.  However, since a genetic mutation implicated in this disease was discovered five years ago, there has been an explosion of new drugs designed to inhibit expression of the mutated gene.   While research continues, access to MPN specialists remains the surest means of securing optimal treatment options.

Photos and background materials at www.mpnforum.com are freely available for use under Creative Common Attribution copyright

 Contact:  Zhenya Senyak,  MPNclinic@gmail.com,

Comments on: "MPNclinic — The Press Release" (4)

  1. I will certainly keep her in my thoughts and know that she will do well.

  2. […] big news continues to be  MPNclinic.  Medscape  picked up the announcement news release and  dozens of patients from (so far) the US, Canada, UK, and Australia have responded with […]

  3. Hi, Margery…Sorry to hear of your daughter’s complications. If you have a question for the doctors on the MPNclinic Rountable please send an e-mail to mpnclinic@gmail.com…and be sure to include your general location. Good luck.

  4. Margery Ehrlich said:

    My 39 year old daughter was diagnosed with pv in January. She has an enlarged liver and hepatic vein clot. She is currently hospitaliZed
    To have a tips procedure

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