Hemophilia Outpatient Program

The Hemophilia Program at JJCCC provides tertiary level specialty care for infants, children and adolescents with hemophilia, thrombosis (blood clots), acquired congenital bleeding and other coagulation disorders. Hemophilia is an inherited blood coagulation disorder. Children with hemophilia lack the ability to stop bleeding because of the low or no levels of factors (specific protein) in their blood, which makes blood clot. Some of the most common symptoms are excessive bleeding and bruising. More than 200 patients are seen in the Hemophilia CCS Center each year.

Condition Management

The hemophilia care team offers multi-specialty medical care, including assessment, consultation, treatment and preventative care. Psychosocial programs such as family support, education, community support and school reintegration are integrated into the condition management of the child. The hematologist/oncologist acts as a consult for any patient that is hospitalized with hemophilia or for those patients who need hospitalization for a type of transfusion or other treatment needs.

Treatment & Preventative Measures

While there is not a cure for hemophilia, treatment can help prevent clotting problems and prevent more bleeding. Sometimes management of anticoagulation therapy, which includes proper diet, healthy lifestyle and anticoagulation medicine, is all that is needed. Immunizations may also need to be given under the skin (subcutaneous) instead of in the muscle (intra muscular) to prevent deep muscle bleeds. However, blood transfusions may also be necessary if significant blood loss has occurred.

Certain blood cells, called factor concentrates, are needed to control or prevent bleeding, by forming a clot. Factor replacement infusion is a common treatment to increase the child’s clotting levels. These blood cells can be given through a port, a small device placed under the skin, or a central venous catheter. With severe hemophilia, this treatment may be scheduled for two or more times each week.

Preventive regimens, such as infusing factor before engaging in an activity, allow a child to participate more fully in activities. These preventive regimens may help avoid a bleed associated with pain, swelling and lengthy therapy that may be required. Before surgery, dental work or an activity that could result in bleeding, the physician may recommend factor replacement infusions to increase clotting levels prior to any procedures. Travel kits are also prepared for children and their families who leave the area for vacation.

JJCCC participates in a national hemophilia registry (HTRS) to gain a better understanding of the hemophilia disease and monitor and track treatments that work or could be improved on a national level.

Patients followed throughout the Hemophilia Center will receive at least one annual comprehensive assessment by the Hemophilia care team to ensure that treatment and condition management plans are on track.

Approved CCS Center

The Hemophilia Center at JJCCC is a California Children’s Services (CCS) approved Special Care Center (SCC). This means a specially designated multidisciplinary care team is responsible for all care coordination and case management of a patient in this program. Patients typically qualify for the Hemophilia CCS Special Care Center by medical diagnosis, complexity of their disease and financial status.

Visit the Hemophilia CCS Center.