Canadian Group Aims To Foster Awareness Of Rare Blood Cancer
Education and Advocacy Eugene Petruk was 33 years old when a routine blood test revealed that he had essential thrombocythemia (ET), one of the three most common myeloproliferative neoplasms (MPN).
Myeloproliferative neoplasms ((MPN) is a type of blood cancer that overproduces blood cells in the bone marrow.
Eugene Petruk was at risk for developing life-threatening conditions, including heart attack and stroke due to blood clotting, and acute leukemia. He was also at risk of secondary myelofibrosis (SMF), a bone marrow scarring that leads to severe anemia and enlargement of the liver and spleen, caused by impaired production of red blood cells.
The doctor didn’t prescribe medication. Instead, because Eugene was symptom free, he used a “watch and wait” approach. He instructed Eugene to undergo regular examinations to look for signs or symptoms of disease progression.
The doctor didn’t prescribe medication. Instead, because Eugene was symptom free, he used a “watch and wait” approach.
Nineteen years later, in 2010, Eugene started to suffer fatigue so extreme that he was struggling to work a full day in his job as an accountant. Eugene bruised so easily that when he had slipped and fallen while walking to the timekeeper’s box during a hockey game, he suffered a subdural hematoma (the pooling of blood between the brain and the membrane surrounding it), usually the result of severe head trauma.
A blood test revealed that his condition had worsened, which threw him for a loop. Feeling helpless, Eugene and his wife, Cheryl, decided it was best to try and learn as much as possible about his condition. Four years later, they are convinced that for a patient to take control of his situation and lessen that feeling of helplessness, he must fully understand his illness. Knowledge is power.
National patient organization holds first meeting
With that in mind, Cheryl Petruk helped found The Canadian MPN Network, a national organization for MPN patients. The group, with approximately one hundred members, held its inaugural meeting last October in Montreal.
The Canadian MPN Network has a main objective to educate patients, their families and the general public about MPN, which is classified as a rare disease. The three most common forms of MPN include: Essential thrombocythemia (ET), in which patients such as Eugene produce an increased number of platelets, the cells that help blood clot; polycythemia vera (PV), characterized by an elevation of red blood cells, which carry oxygen to the body; and primary myelofibrosis (PMF), which is the same as secondary myelofibrosis (SMF) except that it develops independently of another MPN.
The new organization is also interested in advocacy, and is pushing for more research funding. Researchers now believe that gene mutation leads to MPN, and efforts are underway to learn more. While there is no cure for MPNs, clinical trials are currently underway to determine treatment options.
MPN patients shouldn’t feel “so alone”
Cheryl, who is chair of the new organization, hopes it will provide a forum for patients to share their stories and communicate with one another. “This should take away some of the anxiety so patients don’t feel so alone,” she says.
Her husband is certainly feeling less anxious these days. “Thanks to all the progress that is being made in research,” says Cheryl, “I am more hopeful now than ever before that my husband and other MPN patients will lead full lives.”