Patients with hemophilia are treated through the Boston Hemophilia Center, the largest hemophilia treatment center in New England. This federally funded center provides comprehensive medical evaluation and treatment, ongoing medical management, counseling and support, and access to new treatment approaches through clinical research.
Patients treated through a designated treatment center like ours have a significantly reduced risk of bleeding complications, better school attendance, and improved emotional health and well-being.
We specialize in treating infants, children and young adults up to age 22 with hemophilia A (factor VIII deficiency), hemophilia B (factor IX deficiency), von Willebrand disease, rare bleeding disorders like factor VII, XI or XIII deficiency, and platelet function disorders.
The first step in treating a child with hemophilia is an accurate and complete diagnosis. Our pediatric hematologist may perform blood tests to confirm the diagnosis, including a complete blood count, a clotting factor test to check levels of “clotting factors” in the blood, and if indicated, DNA testing to test for a specific mutation and identify carriers. A review of the child’s family medical history may also aid in diagnosing the disease.
Hemophilia treatment depends on the type and severity of disease, with the goal of preventing complications associated with bleeding (primarily head and joint bleeding). Factor replacement therapy is the basic treatment for people with bleeding and clotting disorders. This is the infusion (injection into the bloodstream) of factor concentrates given to prevent and control bleeding.
Mild hemophilia can be treated with injections of a synthetic hormone called DDAVP or nasal spray that may increase the level of Factor VIII in the blood. In addition, our pediatric hematologist will recommend giving a child with hemophilia immunizations under the skin instead of in muscle to prevent deep muscle bleeds; avoid prescribing aspirin or ibuprofen, as well as products containing them; and provide frequent, follow-up care, including regular assessment of joints.
Factor replacement therapy is the basic treatment for people with bleeding or clotting disorders. This is the infusion (injection into the bloodstream) of factor concentrates given to prevent or control bleeding or excess clotting.
We know factor products and supplies are very costly. As a federally designated hemophilia treatment center, the Boston Hemophilia Center negotiates highly competitive rates with commercial insurers and provides discounts to MassHealth.Proceeds from the Factor Program support such important initiatives as:
To enroll in the Factor Program or for other issues and questions, please contact:Clifford F. Haas, Factor Program Customer Service and Operations ManagerPhone: 617-732-5409Fax: 617-732-5706Email: firstname.lastname@example.org
To contact the Factor Program Pharmacy:Eaton ApothecaryPhone: 617-265-3323
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center patients have access to the broadest set of pediatric expertise available. The breadth of our expertise allows us to assemble a team of specialists to meet the specific needs of each patient.
At the core of the treatment team is both a hematologist and a geneticist to advise families on the genetic implications of hemophilia. Our hematologists, nurse practitioners and social workers educate patients and families about hemophilia and offer psychosocial support throughout the treatment process. When requested, we can do outreach at schools and work directly with teachers to integrate students with hemophilia into the classroom.
Dana-Farber/Boston Children's is partnering with the Hematology program at Sawai ManSingh (SMS) Medical College and Hospital located in Jaipur, India.
Dana-Farber/Boston Children's Ellis Neufeld, MD talks about giving children with serious blood disorders a chance for a normal life.