Managing Hemophilia The Hemophilia Care Team
For people with hemophilia, every member of the comprehensive care team at the treatment center plays an important role in improving the physical, emotional, and mental well-being of patients with hemophilia and their families.
Of course, patients and caregivers are also an important part of the care team, and as such, you will be encouraged to take an active role.
Who Is On A Hemophilia Care Team?1,2
Although the composition of the hemophilia care team can vary by treatment center, you'll usually find the following professionals and services:
- Hematologist: The hematologist is a doctor who specializes in blood disorders. A hematologist will help make decisions about additional tests, specialists, and other medical issues. The hematologist generally will see patients once or twice a year to monitor development and joint growth and test blood. Each person with hemophilia is assigned a hematologist after joining a treatment center.
- Nurse Coordinator: The nurse coordinator is often the link between the person with hemophilia and the rest of the comprehensive care team. He or she arranges tests and checkups, refers the patient to other experts, keeps records, and performs factor infusions in the clinic. Educating families is a crucial role for nurse coordinators. They teach families about the basics of hemophilia, including how to infuse clotting factor. The nurse coordinator also can provide information about hemophilia to local doctors, schools, or places of employment.
- Pediatrician: The pediatrician is a child's regular physician. He or she specializes in infant and child development. The pediatrician may refer questions about hemophilia-related treatment to a treatment center, but will continue to handle all routine health care, such as immunizations. A pediatrician might not always be a part of the comprehensive care team, but should be willing to work with whatever medical personnel you require.
- Social Worker: This person specializes in helping people with hemophilia and their families deal with various life issues related to hemophilia. He or she can help with a particular crisis and/or day-to-day problems with family, school, or work. Financial concerns, insurance, and government programs are all areas in which social workers are trained to help. For parents, a social worker can help ease the stress involved in raising a child with a chronic medical condition.
- Orthopedist: The orthopedist is a specialist in bone and joint development and injuries. With the advice of a hematologist, the orthopedist might perform surgery on damaged joints. He or she might be called in to examine your joints for signs of damage if you have experienced frequent or prolonged bleeds. The orthopedist can order physical therapy to decrease pain and offer protective and corrective devices, such as casts and splints, to aid healing in joints and bones.
Find More Help And Resources Here
- Get an overview of hemophilia.
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- Proactively manage your health insurance.
Additional Care Teams Members
Other members of the comprehensive hemophilia care team can include the following:
- Physical Therapist: The physical therapist specializes in muscle development and motor coordination. He or she can plan exercise programs and give advice on sports and activities. The physical therapist might use ultrasound, water therapy, massage, or other methods to improve joints and muscles.
- Geneticist: The geneticist is a specialist in genetic disorders whose main job is to determine whether any females in a family are carriers of the hemophilia gene. The geneticist also can explain how hemophilia is passed from one generation to the next and offer genetic counseling to families.
- Radiologist: The radiologist performs and analyzes x-rays of muscle, joint, and internal injuries. These x-rays can detect internal bleeding that is not readily apparent. The radiologist also can conduct computed tomography scans (CTs), which take cross-sectional pictures of the brain and other parts of the body.
- Dentist: It's important to find a dentist who specializes in bleeding disorders. Your treatment center may have a dentist on staff, or they can recommend a dentist who is right for you.
- Laboratory Technician: The laboratory technician performs blood tests that can measure factor levels, determine whether someone is a carrier, or detect abnormalities such as an inhibitor.
Note: ThereForYou.com does not recommend a particular treatment for specific individuals and recommends that you consult your treatment center or physician before pursuing any course of treatment.
References
- Comprehensive Medical Care - Hemophilia Treatment Centers. The National Hemophilia Foundation website. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=203&contentid=385. Accessed June 8, 2011.
- Treatment Centers. Centers For Disease Control And Prevention website. http://www.cdc.gov/ncbddd/hemophilia/treatment.html. Accessed June 8, 2011.
