Hemophilia/Bleeding Disorders Program The Hemophilia/Bleeding Disorders Program offer compassionate, state-of-the-art clinical care to patients and their families, advancing our understanding of the disorder through research and educating future health care providers and leaders in the field. The Hemophilia/Bleeding Disorders Program receives funding from the Pennsylvania Dept. of Health and participates in national clinical trials.
Comprehensive Care: Comprehensive care of the child with hemophilia is defined as supervision of all medical and psychosocial aspects affecting the child and family including:
- Regular clinic appointments: Most patients with bleeding disorders require routine once or twice a year clinic visits to reassess their condition and adjust the treatment. We pay great attention to risk assessment and injury prevention and during comprehensive visits provide education to our families about safety and sport participation. In many cases we can allow our patients to participate in their “dream” sport by modifying their treatment schedule.
- Home Treatment: Home treatment is the process by which trained family members and patients assess bleeding episodes and, when necessary, administer the infusion of clotting (or coagulation) factor at home.
- Home Nursing: When family members are not yet trained to assess and treat bleeding episodes, or for other special circumstances, home nurses with expertise in pediatric hemophilia care can help. Home nurses assist families throughout the Philadelphia area, in close coordination with the Hemophilia/Bleeding Disorders team.
- Infusion workshops: For our young patients with hemophilia who are learning to infuse we organize infusion sessions where they can learn and practice infusion techniques. We invite older patients to volunteer and share their experience.
- Orthopedic Care: Children with certain forms of hemophilia and bleeding disorders may develop problems with bleeding in their joints. The comprehensive clinic includes regular evaluation by physical and occupational therapists who can help to develop individual programs for maintaining healthy muscles and joints.
- Dental Care: For children who have hemophilia, it is important to let their dentist know, so that dental care can be coordinated with the Hemophilia/Bleeding Disorders team. The Dental Department at St. Christopher’s is experienced in coordinating expert pediatric dental care with special attention to managing bleeding disorders.