Blood disorders, such as hemophilia and von Willebrand Disease, affect men, women and children of all ages. Approximately 20,000 Americans are living with hemophilia; two million others may have von Willebrand Disease (vWD). No cure for either condition has yet been discovered. But, thanks to the latest medical advances and specialized comprehensive treatment, anyone with a blood disorder can lead an independent, productive and active life.
UHS' Blood Disorder Center provides comprehensive care for those with blood disorders—from diagnosis to treatment to home care and support services. Physicians, nurse specialists, dentists, orthopedists, physical therapists, and social workers treat people diagnosed with hemophilia and vWD at a dedicated site at UHS Wilson Medical Center. They also assist family physicians throughout the region in caring for persons with blood disorders.
Comprehensive care means total care. At our Johnson City, NY, Blood Disorder Center, we treat the whole person, and his or her family, through continuous supervision of all medical, psychological, and social aspects of blood disorders. The Center is recognized as a federally-funded Regional Comprehensive Hemophilia Center and is affiliated with the National Hemophilia Foundation and other regional hemophilia centers. The growth of comprehensive care centers like ours throughout the United States has greatly improved the quality of life for thousands of people with blood disorders.
Comprehensive Blood Disorder Services, Johnson City, NY
The Hospital Advantage
- 24-hour service - Immediate access to medical coverage and
- consultation by physicians and staff skilled in treating hemophilia, vWD, and related disorders.
- Infusion therapy - A complete supply of specialized treatment products is available for prompt and effective care of persons with bleeding disorders.
- Coagulation laboratory - Specialized tests to detect blood disorders, diagnose carriers, and monitor treatment effects.
- Consultation - Assistance to primary care physicians in caring for patients with blood disorders.
- Genetic services - Family counseling regarding inheritance factors, carrier and prenatal testing, and family planning services.
- Home therapy program - Training and super- vising patients and family members to perform self-infusion when needed.
- HIV services - Testing and counseling services for persons with an extended history of blood product use as well as medical care, support and referral services for those who are infected with HIV.
- Support groups - Patients and families provide assistance and support to one another in dealing with various aspects of blood disorders.
- Summer camp for children - Camp High Hopes in upstate New York provides an opportunity for children with bleeding disorders to enjoy a typical summer camp experience. Arrangements for camp, including financial help if needed, are coordinated through the Blood Disorder Center.
- Patient and family education - Current books, pamphlets, magazines, newsletters, and videos are available for better understanding blood disorders.
- Medical identification - Medic-alert cards, bracelets , and an Auto Visor emergency in formation card are offered
- Professional resource - The Blood Disorder Center serves as a resources for physicians, dentists, nurses and other health professionals, community agencies, schools and the general public.
- Financial and reimbursement assistance - A service to coordinate information about available financial help for patients and their families.
- Newsletters - Regular newsletters keep patients, families, and health providers up to date on current treatments and available programs and resources.
UHS’ Blood Disorder Center is located at UHS Wilson Medical Center in Johnson City, N.Y. The Center’s hospital location provides a critical advantage to patients with bleeding disorders: continuity of care in case of an emergency bleeding episode. Skilled medical staff familiar with the patient’s case are on hand day and night to swing into action. Patients have direct access, when necessary, to an acute care hospital with both pediatric and adult beds. Emergency infusions are always available.
Traveling directions to the Blood Disorder Center
Traveling east or west on Route 17, take exit 70S and immediately follow signs for Johnson City. At the first traffic light, turn right onto Main St. (Route 17C) and travel east for approximately a half mile. Turn right onto Arch St. Free patient parking is available in the Arch St. parking ramp or in the Arch St. outpatient visitors’ parking lot. The center will validate your ramp parking stub.
Take the parking ramp elevator to the first floor, or enter the Picciano Building through the doors marked "Conference Center," and take the elevators to the first floor. Go across the street and enter the main hospital through the Baldwin St. entrance. The Blood Disorder Center will be directly on your left.
Hemophilia, a genetic blood clotting disorder that results in prolonged bleeding, almost always affects males. The disease is hereditary, passed from parent to child. In one-third of all cases, where there is no family history of the disease, hemophilia seems to be caused by a spontaneous gene mutation. Hemophilia affects persons of all races, nationalities and economic backgrounds.
A person with hemophilia has either an inactive or an inadequate supply of one of several factors needed for blood to clot normally. Persons with hemophilia do not bleed faster than other people; instead, their blood forms clots more slowly. Minor cuts are easily treated, but bleeding is often internal, into joints and tissues. Without proper treatment of the swelling caused by this internal bleeding, permanent disabling damage may ensue. Bleeding can begin for no apparent reason or be the result of a bump, a bruise, or an injury.
Hemophilia can be mild, moderate, or severe. The major types of hemophilia are hemophilia A and the less common hemophilia B, also called Christmas disease. Many mild cases are not diagnosed until after the occurrence of an injury or major surgery.
Hemophilia is treated each time internal bleeding occurs by infusing into a vein a clotting factor. Available in a concentrated freeze-dried form, clotting factor enables people with hemophilia to treat themselves at home, work and school.
This development has opened new job, travel and social opportunities for many people with hemophilia.
Clotting factor replaces the missing protein needed to form a blood clot. Although an infusion will stop bleeding, clotting factor remains effective for less than a day. Many people with hemophilia use self-infusion on a regular basis to prevent serious bleeding in advance.
Understanding von Willebrand Disease
Von Willebrand Disease (vWD) is the most common inherited bleeding disorder found in humans. Some patients diagnosed with vWD lack an adequate level of a specific blood protein required for blood clotting—the von Willebrand factor (vWF); other vWD patients have a clotting factor that works improperly. vWD is usually a mild disorder and often goes undiagnosed. In more severe cases, vWD can resemble hemophilia, but it is rare for persons with vWD to bleed into joints or muscles. Typical vWD symptoms include recurrent nosebleeds, easy bruising, heavy menstrual flow, or excessive, unusual bleeding from the mouth or gums. People with vWD can bleed heavily for a long time after surgery or injury.
One of two children born to a parent carrying the vWD gene is likely to have the disease. Unlike hemophilia, however, vWD equally affects sons and daughters of the carrier.
VWD is divided into "types" according to whether a person has a decreased level of vWF in his or her blood, has a type of the blood clotting factor that does not work, or both. Treatments vary by each type. For minor bleeding, such as nosebleeds, treatment may not be necessary. When treatment is needed, medications are now available that may be applied to the bleeding site. Oral medications have also been developed to help keep a blood clot in place long enough to "plug" the bleeding site. More serious bleeding problems may require infusions.
UHS Wilson Medical Center, Johnson City, NY