Comprehensive Care

Hemophilia care typically involves a comprehensive and dedicated care team at your Hemophilia Treatment Center (HTC). Your HTC can help support families’ and patients’ physical, emotional, and mental well-being.

Family is another important part of the care team. Families also need support!

Teams vary, but usually include the following professionals and services:

• Hematologist. The hematologist is a blood disorders specialist. A person with hemophilia is assigned a hematologist after joining an HTC. The Association of Hemophilia Clinic Directos (AHCDC) recommend patients see the hematologist once or twice per year to monitor your development and joint growth, and to get appropriate tests.
• Nurse Coordinator. The nurse coordinator can often link patients with the other members of the comprehensive care team, arrange appointments or tests, make referrals to other experts, keep records, or perform Factor infusions. The nurse coordinator can also educate families about the basics of hemophilia, including how to infuse clotting Factor. They can also give information about hemophilia to doctors, schools, coaches, or employers.
• Physiotherapist The physiotherapist specializes in muscle development and motor coordination. They can develop exercise programs and advise on appropriate activities. They can also use ultrasound, water therapy, massage, or other methods to improve joints and muscles.
• Social Worker. A social worker helps people with hemophilia and their families cope with life issues related to hemophilia. They can help with small or large problems with family, school, or work. They can help ease stress, solve problems, and offer information about government programs.

Other team members, who play a supporting role in comprehensive care, make important contributions:

• Pediatrician. The pediatrician is the child's regular doctor (if your child does not see a general practitioner), and is a specialist in infant and child development. The pediatrician may refer you to a hemophilia treatment center, but will still oversee your child’s general medical care.
• Geneticist. The geneticist is a specialist in genetic disorders. They can find out if a female family member carries the hemophilia gene. They can also explain how hemophilia is passed from one generation to the next and offer families genetic counseling.
• Radiologist. The radiologist performs and analyzes x-rays of muscle, joint, and internal injuries. These x-rays can show internal bleeding. The radiologist can also take cross-sectional pictures of the brain and other parts of the body using computed tomography scans (CTs).
• Dentist. It's important to find a dentist who specializes in bleeding disorders. Your HTC might already have a dentist on staff, or they can recommend one.
• Laboratory Technician. The laboratory technician performs blood tests that can measure Factor levels, determine whether someone is a carrier, or detect blood abnormalities.

Visit the Comprehensive Care Corner to learn more about team member roles, including one’s family.