Bleeding disorders refer to a group of blood conditions that involve a lack or deficiency of a clotting protein in the blood. People with bleeding disorders have a tendency to bleed at times when others would not, or bleed excessively compared to unaffected people. The most well-known bleeding disorder is hemophilia, a largely inherited disease caused by a lack or an insufficiency of blood clotting protein called factor. The most prevalent bleeding disorder is von Willebrand disease, which is due to the deficiency of von Willebrand factor; it affects factor VIII and platelets. Some estimates suggest von Willebrand disease may affect one out of every 100 individuals worldwide. There are other rare bleeding disorders that cause patients to suffer from frequent and prolonged bleeding. Common symptoms of bleeding disorders may include easy bruising (bleeding under the skin), frequent bleeding of mucous membranes in the nose (epistaxis) or mouth, easy bleeding following dental work, excessive menstrual bleeding in females (called menorrhagia), prolonged bleeding following surgery and bleeding into the joints and muscles. Your doctor and nurse will provide you with educational materials on your particular condition. HANDI is the information clearinghouse for the National Hemophilia Foundation. HANDI can provide you with a full range of pamphlets and written material related to bleeding disorders. HANDI may be reached by telephone, toll free, at 1-800-42-HANDI. For more information see the NHF Web site.
Special Health Considerations for People with Bleeding Disorders
Joint Health Considerations
Dental Health Considerations
Nutritional Health Considerations
Special Joint Health Considerations
For patients with bleeding disorder, maintaining and enhancing good joint health is a critical health concern. Typically, people who have severe hemophilia or other related bleeding disorders experience 25-30 bleeding episodes within the joints each year. Some patients experience repeated bleeding episodes into the same particular joints. This is known as a target joint. Over time, repeated joint bleeding can lead to arthritic, orthopedic problems that may cause pain and limit functioning. Clinically, efforts are made to monitor joint health, encourage physical exercise that emphasizes strengthening and balance. During comprehensive hemophilia clinic evaluation, our physical therapist, Kim Bardsley, PT, evaluates and measures joint health and functioning, using the an instrument developed by the World Federation of Hemophilia. Evaluation includes assessment for pain, swelling, and range of motion, with points given for deviations from normal joints, looking at each joint. The joint score is monitored at each clinic evaluation. Based on assessment of the joint score, your physician may adjust your treatment regimen to include an exercise plan, physical therapy, and possibly use of orthotics such as splints or surgical intervention. We have attached a copy of the World Federation of Hemophilia joint assessment instrument.
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Special Dental Health Considerations
Good dental care is especially important for persons with bleeding disorders. Often, people with bleeding disorders are reluctant to brush their teeth and especially to floss due to fears of bleeding. The reality is, however, that by skipping preventive daily care can result in more problems that require surgical intervention. Surgical intervention can be costly, requires close clinical monitoring, and occasionally demands treatment with factor replacement due to risks of bleeding. It can also interrupt time from work and school. For these reasons, prevention and early identification of complications is emphasized at our center. We therefore have integrated dental screening at our comprehensive hemophilia evaluations. Dr. Mary Hayes and her associates, Linda Breen, RD and Kimberly Whitaker, DA provide this excellent consultation to our team. They maintain a dental practice downtown for regular dental care. They can provide excellent consultation to your regular community dentist as well.
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Special Nutritional Considerations
Maintaining healthy nutrition and weight are part of the overall health of people with bleeding and clotting disorders. Being overweight puts additional stress on the joints, putting them at risk for additional bleeds. Having a sedentary lifestyle can contribute to being overweight. Therefore, our patients are encouraged to develop an appropriate fitness plan that is compatible with their overall health. For these reasons, nutritional evaluation has been integrated into our evaluation during comprehensive hemophilia clinic with Helen Tayag, RD. Nutritional assessment includes the Body Mass Index (BMI), a special formula for measuring body fat by looking at one’s height and weight. Tips for improving weight, from changes in daily habits to lose weight or ways to supplement weight with different foods or nutritional supplements may be provided.
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