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Pocket Guide to the Diagnosis, Evaluation, and Management of von Willebrand Disease. Bethesda, MD: NHLBI Health Information Center. 2008. 15 p.

This pocket guide summarizes guidelines for the diagnosis, evaluation, and management of von Willebrand disease (VWD), an inherited bleeding disorder that is caused by a deficiency or dysfunction of von Willebrand factor (VWF). VWF is a plasma protein that mediates the initial adhesion of platelets at sites of vascular injury and also binds and stabilizes blood clotting factor VIII in the circulation. Defects in VWF can cause bleeding by impairing platelet adhesion or by reducing the concentration of blood clotting factor VIII. This brochure offers a summary of the clinical practice guidelines developed by an expert panel convened by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) from the United States Expert Panel. Topics include the initial evaluation of the patient for VWD or other bleeding disorders, laboratory assessment, making the diagnosis of VWD, and management considerations, including general management of VWD patients, treatment of minor bleeding and prophylaxis for minor surgery, treatment of major bleeding and prophylaxis for major surgery, management of menorrhagia and hemorrhagic ovarian cysts in women with VWD, management of pregnancy and childbirth, and caring for patients with acquired von Willebrand syndrome (AVWS). All of the information is presented in figures or tabular format, or bulleted columns, for ease of access. A final section refers readers to the NHLBI Health Information Center at 301–592–8573 or www.nhlbi.nih.gov for more information. 2 figures. 1 table.

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ABC of Clinical Hematology. Williston, VT: Blackwell Publishing Inc. 2007. 99 p.

This book on clinical hematology is from a series of resource books written by specialists for nonspecialists. The book is designed to be easy to use and covers the symptoms, investigations, treatment, and management of conditions presenting in day-to-day practice. The book includes fifteen chapters covering iron deficiency anemia, macrocytic anemias, hereditary anemias, polycythemia, essential thrombocythemia and myelofibrosis, chronic myeloid leukemia, the acute leukemias, platelet disorders, the myelodysplastic syndromes, multiple myeloma and related conditions, bleeding disorders, thrombosis and anticoagulation, lymphoproliferative disorders including chronic lymphocytic leukemia, stem cell transplantation, hematological disorders at the extremes of life, hematological emergencies, and the impact of molecular biology and gene therapy on the field of hematology. The book includes full-color photographs and illustrations. Each chapter concludes with a list of references, and a detailed subject index appears at the end of the text.

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All About Von Willebrand Disease...For People With Von Willebrand Disease And Their Families. 2nd ed. Montreal, QC: Canadian Hemophilia Society. 2007. 87 p.

This monograph from the Canadian Hemophilia Society provides comprehensive information about von Willebrand disease (VWD), a disease characterized by problems in the von Willebrand factor (VWF). The VWF is a protein in the blood that is necessary for proper blood coagulation. When there is not enough VWF in the blood, or when it does not work the way it should, the blood takes longer to clot. This booklet reviews the different types of VWD, the role of heredity, the symptoms, diagnostic tests that can confirm the condition, treatment options, and strategies for healthy living with VWD. The lifestyle factors discussed include the safety of blood products, coping with nose bleeds, conception, pregnancy and childbirth, medications to avoid, exercise, fitness and sports, child care, schooling, employment, insurance, traveling, and medical identification. The booklet concludes with the contact information for the Canadian Hemophilia Society, a list of hemophilia or bleeding disorders treatment centers in Canada, a glossary of terms, a subject index, and a bibliography. The booklet includes black-and-white illustrations. 6 references.

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Bleeding Disorders, Thrombosis and Anticoagulation. IN: Provan, D., ed. ABC of Clinical Haematology. Williston, VT: Blackwell Publishing Inc. 2007. pp. 52-56.

Blood within the circulation must remain fluid, but if a blood vessel is damaged, localized coagulation must take place to prevent blood loss. This complex interacting system can be disturbed by inherited or acquired factors, resulting in bleeding or thrombotic disorders. This chapter about bleeding disorders, thrombosis, and anticoagulation is from a book on clinical hematology, written by specialists for nonspecialists. The book is designed to be easy to use and covers the symptoms, investigations, treatment, and management of conditions presenting in day-to-day practice. In this chapter, the author outlines the approach to a patient with a suspected bleeding disorder, which should include a medical history, examination, coagulation screening tests, and specialist coagulation tests. The chapter also covers congenital bleeding disorders, acquired bleeding disorders, venous thromboembolism, the inherited thrombophilias, and treatment strategies for venous thromboembolism. The chapter is illustrated with full-color photographs, drawings, and charts. 3 figures. 7 tables. 6 references.

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Care and Treatment of Carriers. Montreal, Quebec: Canadian Hemophilia Society. 2007. pp 79-92.

This chapter on the care and treatment of carriers is from a monograph that provides information for female carriers of hemophilia A and B, a type of genetic bleeding disorder traditionally experienced by males but passed on genetically by females. Recent understanding of this disorder shows that females can have the same problems as males with mild hemophilia, such as hemorrhaging after surgery or trauma. Women with clotting factor levels as high as 60 percent can have abnormal bleeding problems, including but not restricted to gynecological and obstetrical bleeding. This chapter describes the multidisciplinary clinics that are being created in Canada for women with bleeding disorders and the medical and surgical options available to women to treat their bleeding symptoms. The chapter briefly reviews the roles of the patient care team, including a hematologist, a gynecologist, an obstetrician, and a nurse coordinator who arranges testing and meetings with the specialists. Medical options discussed include hormone therapy, desmopressin, antifibrinolytic agents such as tranexamic acid (Cyklokapron), clotting factor concentrates, and complementary medicines. Surgical options for menorrhagia discussed include uterine ablation, hysterectomy, laparoscopic endometrial removal, oophorectomy, and dilation and curettage (D and C). 1 figure. 4 tables.

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Complementary and Alternative Medicine. Montreal, Quebec: Canadian Hemophilia Society. 2007. pp 93-102.

This chapter on complementary and alternative medicine is from a monograph that provides information for female carriers of hemophilia A and B, a type of genetic bleeding disorder traditionally experienced by males but passed on genetically by females. Recent understanding of this disorder shows that females can have the same problems as males with mild hemophilia, such as hemorrhaging after surgery or trauma. Women with clotting factor levels as high as 60 percent can have abnormal bleeding problems, including but not restricted to gynecological and obstetrical bleeding. This chapter describes alternative or holistic treatments people can use to complement their conventional medical care. The authors review many natural and pharmaceutical products that can actually cause or worsen bleeding in carriers of hemophilia A and B. Specific complementary practices discussed include stress reduction techniques, aromatherapy, massage, Ayurvedic medicine, naturopathic medicine, traditional Chinese/Asian medicine, homeopathy, and botanical medicine. One section briefly discusses remedies that are contraindicated for people with bleeding disorders, including alcohol; aspirin; danshen; dong quai, or Chinese angelica; ephedra ephedrine, or Ma Huang; fenugreek; feverfew; garlic in capsule form, safe as a food; ginger in capsule form, safe as a food; ginkgo biloba; ginseng; horse chestnut; ibuprofen; jingui huayu; kava; matricaria recutita, or chamomile; omega 3 essential fatty acids; papaya; pineapple; and vitamin E. Readers are encouraged to work in tandem with their health care providers when incorporating any alternative or complementary approaches.

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Factor XI Deficiency: An Inherited Bleeding Disorder. Montreal, QC: Canadian Hemophilia Society. 2007. 24 p.

This document provides comprehensive information about Factor XI deficiency, a rare blood coagulation disorder. The authors review the history of this disorder, which was described in 1953, and consider the transmission of Factor XI deficiency, which is an inherited disorder. A series of charts show the percentage possibility of passing on the disorder, depending on the genes carried by each parent. Additional topics describe normal blood clotting and the role of coagulation factors, the incidence of Factor XI deficiency, diagnostic strategies, symptoms, problems specific to women with Factor XI deficiency, and treatment options. A variety of treatment and prevention options are available, including fresh frozen plasma, Factor XI concentrate, hormone therapy, desmopressin (DDAVP), and tranexamic acid––Cyklokapron. One section offers practical strategies for preventing excessive bleeding during dental care and reviews first aid to be administered in common situations such as nosebleeds. People with Factor XI are advised to wear a medical identification tag, to be vaccinated regularly, and to work closely with their team of health care providers. The document concludes with the contact information for the Canadian Hemophilia Society and a bibliography. 6 figures. 12 references.

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Fibrinolytic Inhibitors in the Management of Bleeding Disorders. Montreal, Quebec: World Federation of Hemophilia. 2007. 16 p.

This monograph describes the use of fibrinolytic inhibitors in the management of bleeding disorders. The author focuses on the synthetic derivative of the amino acid lysine, called epsilon-aminocaproic acid (EACA), and the more potent tranexamic acid (TA, also known as AMCA). The naturally occurring aprotinin is only briefly discussed because it is not principally used in patients with bleeding disorders. Topics include the activation of the fibrinolytic system, inhibitors in the fibrinolytic system, the pharmaceutical fibrinolytic inhibitors EACA and TA, and clinical uses in gynecology, bleeding in the gastrointestinal tract, bleeding in the nose and mouth, dental surgery, and major surgery. The author concludes that research studies support the beneficial effects of antifibrinolytic agents, most often TA, in patients apparently without congenital or acquired bleeding diseases. TA can be administered intravenously, orally, or topically, and no severe side effects have been documented. A table of abbreviations and list of references conclude the document. 1 figure. 1 table. 110 references.

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Haemophilia A and Haemophilia B. IN: Roberts H.R., ed. Haemophilia and Haemostasis: A Case-Based Approach to Management. Williston, VT: Blackwell Publishing Inc. 2007. pp 3-92 .

This chapter about hemophilia A and hemophilia B is from a book that compiles a breadth of questions relating to perplexing or complicated management questions in the fields of hemophilia and hemostasis. The contributing authors have provided practical, hands-on answers to the questions sent in by practitioners in the field. This section discusses hemophilia and immune tolerance therapy, the hemophilic ankle and knee, combined hemophilia A and B carriers, hemophilia with HIV and hepatitis C, a premature infant with hemophilia, pregnancy in women with hemophilia, mild hemophilia in women, anticoagulation and hemophilia, hemophilia and scuba diving, and treatment of hemophilia and specific conditions, including hepatitis C, physical therapy, renal bleeds, ventricular septal defect repair, hepatitis C and recurrent bleeding, isotretinoin use, laser eye surgery, pseudotumors, and continuous infusion. A final section considers complications of treatment for hemophilia A and hemophilia B. Much of the information is presented through case studies. 11 figures. 55 references.

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Haemophilia and Haemostasis: A Case-Based Approach to Management. Williston, VT: Blackwell Publishing Inc. 2007. 229 p.

This book compiles a breadth of questions relating to perplexing or complicated management questions in the fields of hemophilia and hemostasis. The contributing authors have provided practical, hands-on answers to the questions sent in by practitioners in the field. The book is organized into seven sections: hemophilia A and hemophilia B, Von Willebrand disease, factor deficiencies, rare platelet and coagulation disorders, acquired bleeding diatheses, miscellaneous questions, and thrombotic disorders. Specific topics covered include the hemophilic ankle and knee, hemophilia with HIV, pregnancy in women with hemophilia, hemophilia and scuba diving, hemodialysis, hepatitis in people with hemophilia, VWD and pregnancy, Factor VIII deficiency, Factor X deficiency, Gardner-Diamond syndrome, cocaine and DDAVP, selective serotonin reuptake inhibitors (SSRIs) and clotting disturbances, the work-up for children with intracranial bleeding, treatment of antithrombin deficiency, recurrent thrombosis, and thromboembolic disease. Most sections include references, and a detailed subject index concludes the volume.

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