Background Information on Sickle Cell Disease

Monday, Mar 16, 2009  |  Updated 4:04 PM CDT
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Background Information on Sickle Cell Disease

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Background Sickle Cell Disease (SCD) Information
 
I.                    SCD Background Information
a.      SCD is an inherited lifelong disease of the red blood cells
b.      Originated in African culture (Mediterranean basin) as a response to malaria
c.      SCD affects people of different ethnic backgrounds, 97% of sickle cell patients in the United States are of African descent
d.      There are over 91,000 Americans of different ethnic backgrounds suffering from SCD
e.      85% of Illinois residents with SCD live in Cook County
f.       Approximately 1800 infants are born with SCD annually
g.      1 in 500 African Americans and 1 in 1000 Hispanic Americans have SCD
h.      1in 10 African Americans and 1 in 172 Hispanic Americans is a carrier of the trait
       i.        A chronic multi-organ disease, complications are many but the Hallmark of SCD is PAIN
 
II.                 University of Illinois at Chicago (UIC) Sickle Cell Center Background Information
a.      Provide comprehensive care to over 500 adult patients and 250 pediatrics patients
b.      Is the only comprehensive adult center of its kind in Illinois with over 25 years of experience
c.      Provide out-patient care, psycho-social services, genetic counseling, patient and family education, professional and community education and outreach,
d.      A leader in research
 
III.               Four Major Issues
a.      The need for ongoing multidiscipline health care for those who have the disease
 
b.      Knowing your Sickle Cell status: Importance of SCREENING - especially those who are 18 - 24 yrs, could be carriers of the gene for SCD and because the carrier state is asymptomatic and therefore the only way to know if you are a carrier is to be tested, affected individuals with the trait unknowingly keep the disease going by passing it on to their children. With screening, genetic counseling and education about SCD an informed decision can be made regards to having children
 
c.      Need for African Americans and other minorities to donate blood
                       
                                                               i.      This population require frequent blood transfusions for complications, surgery preparation etc.
 
                                                             ii.      A major complication of blood transfusions is the development of antibodies
 
                                                            iii.      These antibodies make it very difficult to find compatible blood in the future
 
                                                           iv.      Using donors from the same family or of the same ethnic background can reduce this mismatching.
 
d.      Funding, there are huge disparities between the amounts of federal dollars allocated to sickle cell when compared to other disorders. For example, there are three times as many babies born with SCD than with cystic fibrosis, 8,000 versus 2,500. For every baby born with cystic fibrosis there are $2,733 research dollars spent to find a cure in contrast to $345.58 spent for every baby born with SCD (National Institutes of Health)

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