Newfoundland and Labrador Blood and Immune Disorders Research Advocacy and Education Project
A Project of Dr. Mary-Frances Scully, Associate Professor, Division of Hematology/Oncology, Memorial University of Newfoundland and Dr. Palinder Kamra, Clinical Associate Professor, Department of Pediatrics, Memorial University of Newfoundland
The NL Thrombosis, Blood and Immune Disorders Education and Research project went very well. Approximately 40-50 people attended.
Guests included patients and family members, nursing staff from 4NA and the ATP, the Hemophilia nurse co-ordinators,Dr. Xie and Dr. Han form the molecular and cytogenetics laboratories, Ms. Marilyn Johnson and staff from the Provincial Blood Co-ordinating program , Professor Lafort from the School of Nursing attended with her husband . Professor Jane Green attended from the Department of Genetics and Prof. Rebecca Law from the School of Pharmacy. The presentation by Mr. Charlie Chesseman a survivor of an allergenic transplant and AML was really well received. Charlie received a perfect score form all 17 attendees who filled out an evaluation form.
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| Dr. Scully |
Dr. Kamara |
Dr. Yee |
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| Mr. Cheesman |
Mrs. Humby |
Dr. Barnes |
Dr. Yee’s talk was truly excellent and cutting edge. After fluently presenting very complex data, Dr. Yee explained that sophisticated studies show that AML is a very heterogeneous( varied ) condition and there are very many sub-types. The hope for the future will be in tailored therapy for each patient. Dr. David Barnes gave a vey interesting talk on the company CSL Behring and its commitment to research and the development of new therapies for rare disorders. Corinne Humby gave a lively talk on Eastern health’s new , innovative Patient Navigator program. Dr. Pali Kamra very generously provided supper for the speakers at the Taj Mahal restaurant before the event and then went on to close this first event . Dr. Kamra is planning to invite a leading Canadian expert on “Primary Immune Deficiency” to give the next talk.
CSL Behring have already offered to sponsor this event in March or April. In January, Dr. Scully plans to organize a second event in January 2011. Dr. L . Whitman , the Director of Hematology Laboratory services has generously agreed to give a public talk in February. Drs. Joanne Hickey and Debbie Bergstrom are working with Myeloma Canada educational event in the spring. Sr. Scully plans to work with the Thrombosis Interest group of Canada ( TIGC) on a symposium on New Anticoagulants, new antiplatelet agents and new therapies to reverse warfarin effects for patients who are bleeding or need emergency surgery and with the NL Chapter of the Canadian Hemophilia Society on Optimal treatment of hemophilia and rare bleeding disorders.
Cancers of the blood and immune system account for 20 per cent of cancer patients in the province of Newfoundland and Labrador. Myeloma and lymphoma are the most common blood cancers. Cancer, diabetes mellitus, stroke, heart disease, blood clots and anemia are highly prevalent in our province. We have become concerned by the possibility that the number of patients presenting with primary resistant leukemia, lymphoma, and myeloma may be increasing.
The anemia of chronic disease is a very common complication of cancer, inflammatory arthritis, uncontrolled diabetes, kidney disease, inflammatory bowel disease and other inflammatory disorders. Anemia caused by iron deficiency occurs at all ages; in young children, teenagers, pregnant women and in elderly people with disorders of the digestive system. Untreated, unrecognized anemia contributes to a decreased quality of life and prolongs hospital stays.
Hemochromatosis is another genetic cause of illness. These patients accumulate iron in their bodies leading to toxicity. The incidence of a variety of genetic mutations is known to be elevated in the Newfoundland and Labrador population.
Five per cent of the population is heterozygous for the Factor V Leiden mutation. Two per cent of the population is heterozygous for the Prothrombin gene mutation. These mutations, under certain circumstances, may increase the risk of the individual experiencing venous or arterial clotting problems such as deep venous thrombosis, pulmonary embolism, myocardial infarction and stroke.
Approximately ten thousand individuals in the province are taking oral anticoagulant therapy to prevent further blood clots. Blood clots are a common complication of cancer therapy, diabetes mellitus as well as being common complications of obesity, inactivity, surgery, injury, cardiac failure, lung failure, inflammatory bowel disease, liver and kidney disease, and other rare illnesses.
In addition to these common disorders, Newfoundland and Labrador has the highest reported rate yet in Canada of rare bleeding disorders. In particular, there is a very high prevalence of mild hemophilia A and severe Factor XIII deficiency. In North America, five to 10 per cent of women experience problems with heavy periods or bleeding with pregnancy. Some become severely anemic and can have life threatening bleeding.
In summary, disorders of the blood and immune system affect a very high proportion of the population of Newfoundland and Labrador. The Newfoundland and Labrador Thrombosis, Blood and Immunology Research and Education Project is designed to promote and develop education and research to address these challenges.