Blood Disorder Center

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.
United Health Services' 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 Wilson Memorial Regional Medical Center. They
also assist family physicians throughout the region in caring for
persons with blood disorders.
Comprehensive care
Comprehensive care means total care. At the 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 Services
• 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.
• Comprehensive clinics - Offered quarterly, an annual
comprehensive evaluation by a team of specialists using a
cooperative, holistic approach to managing blood disorders.
• 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.
The Hospital Advantage
United Health Services’ Blood Disorder Center is located at
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.
Understanding Hemophilia
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.
Treating hemophilia
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.
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