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Families affected by bleeding disorders have many
stressors. They must learn about their specific bleeding disorder and stay
informed about treatment options. They must monitor and respond to bleeding
episodes and their secondary effects; they must secure a way to pay for very
expensive treatment (the cost of treatment for a severe hemophilic can be as
high $100,000/year). Families also must educate others who interact with
their child and dispel misconceptions and fears associated with their
disease and its complications.
Adults face even greater challenges as their children reach school age and
want to participate in activities and be independent. These problems can
become overwhelming and it is fortunate that in Oklahoma, and across the
U.S., a well organized network of hemophilia treatment centers was created
with funding from the federal government and from some of the states which
provide comprehensive services delivered by
multi-disciplinary teams specially trained to respond to the problems faced
by families affected by hemophilia and other bleeding disorders. |
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Comprehensive Care
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| In the 1970s, as many
advances were made in hemophilia treatment, the focus of hemophilia care
shifted from crisis and emergency management of bleeding episodes to
long-term problems such as the prevention of joint disease, home treatment,
education, employment, and other psychosocial factors. Federal legislation
in 1976 established and provided funding for a network of comprehensive care
centers. |
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| These (HTCs) now provide
and coordinate a broad range of treatment and prevention services provided
by physicians who specialize in hematology and other relevant specialties
such as orthopedics, social work, psychologists, nurses with extensive
training and experience with hemophilia, genetic counselors, dentists,
dental hygienists, and dieticians. |
Benefits of Comprehensive Care and Treatment
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- An increase of 390% in the number of patients
performing home infusions
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- A decrease in the average number hospital
admissions of 88%
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- A decrease in the average days/year lost from work
or school of 73%
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- Accompanied by a 74% decrease in adult
unemployment
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- A decrease in the average cost of care per patient
per year of 74%
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CDC Data Shows Lower Death and Hospitalization Rates
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| Newer data collected by the
CDC confirms that, in addition to these benefits, receiving treatment from a
federally funded HTC also decreases the risk of death and hospitalization
for persons with hemophilia, particularly those who self infuse. For this
reason, now more than ever, it is important to carefully consider where you
and/or your child receives medical care for your bleeding disorder and
whether you are receiving the best care available. |
| Disclaimer |
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This Web site is created for information
purposes only and not to render medical advice or professional services. The
information provided herein should not be used for diagnosing or treating a
health problem or a disease and is not a substitute for professional care
from your own physician. If you think you have, or if you do have, a health
problem or a specific health care question or concern, you should consult
you physician or health care provider. |
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Click Here for the Oklahoma HTC! |
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