The Hemophilia Care Program of the Puget Sound Blood Center helps people with hemophilia obtain early, effective treatment and acquire skills that foster independence and minimize the acute and chronic complications of hemophilia.
A multidisciplinary team of health-care professionals addresses concerns including education, health insurance, orthopedics, dentistry and HIV (the virus that causes AIDS). Pediatric services are coordinated with specialists at Children's Hospital and Medical Center in Seattle. Outreach clinics, home visits to families, and inservice meetings with health professional are provided throughout Washington state. Program staff also coordinate community resources for hemophilia care.
- medical assessment and treatment of bleeding episodes
- diagnostic testing and specialized coagulation studies
- genetic counseling and carrier testing
- home infusion training
- individual and family education individual and family counseling
- clinical trials
- resource coordination
- 24-hour triage and consultation
- distribution of clotting concentrates
Consultation is available 24 hours a day to help patients, families and physicians assess symptoms and obtain effective treatment when acute bleeding problems occur. Healthcare professionals use consultation services for treatment recommendations to manage complex medical, dental and surgical procedures.
Summer camp is one of the most eagerly anticipated events for children with hemophilia and their families. Each year, campers spend a few days in the great outdoors learning home treatment skills and participating in physical activities which promote good health and positive self-esteem. Summer camp also offers families an opportunity to meet other parents and siblings dealing with hemophilia. Summer camp is a joint effort of the Hemophilia Care Program and the Hemophilia Foundation of Washington.
Hemophilia is an inherited disorder that prevents normal clotting of blood. It is caused by the absence of certain proteins in the blood known as clotting factors. Most cases of hemophilia are caused by deficiencies in factor VIII or factor IX. There are approximately 900 people with hemophilia in Washington state.
The bleeding disorder may be mild, moderate or severe, depending upon the level of clotting factor in a person's blood. People with severe hemophilia require frequent infusions of clotting factor concentrates.
Clotting factor concentrates are safer now than ever before. Donor testing and plasma processing methods have nearly eliminated the risks of virus transmission from clotting factor infusions, and synthetic factors are becoming available. There have been no new HIV infections associated with screened, viral inactivated clotting products available in the United State since 1987. However, many people with hemophilia were infected with hepatitis and HIV in the early 1980's. the Hemophilia Care Program provides counseling, education and referral services to meet the specialized needs of these individuals and their families.