Sickle Cell Disease Awareness

A candle loses none of its light by lighting another candle!

In Need of Blood Donors

This page includes:

About and Goals of Blood Transfusions 

Strokes and Blood Transfusions ~ Did you know . . .

African-American Donors & (CEK Negative Blood)

Understanding Antigens and Antibody

Blue tagging blood, but not in California ~ Yet! 

This Page in Review

About and Goals of Blood Transfusions

 Hear from a medical provider:

Thomas D. Coates Sickle cell disease: evolving role of transfusion

Strokes and Blood Transfusions ~ Did you know . . .


 - *Most children with sickle cell disease will need at least one blood transfusion before the age of 10.


 - A transfusion is necessary before most surgeries (major or minor)? If they need lifesaving surgery and there is no blood, there might be no surgery! 

 - Today many sickle cell children, teens, and adults have to receive “Hyper-Transfusion Therapy” (they get a blood transfusion every two, three, or four weeks) to prevent them from having a stroke or other complication?


 - One of the major causes of Pediatric strokes is Sickle Cell Disease! 

 - The most common cause of a stroke in children with sickle cell anemia is cerebral infarction (b1ockage of the oxygen supply to the brain by sickle cells). Strokes occur in six to 12 percent of individuals with sickle cell anemia, more commonly between three and 10 years of age.

 - Children with SCD are 200 to 400 times more likely to suffer a stroke, compared to children without SCD. The Cooperative Study of Sickle Cell Disease showed that stroke is a constant threat after age 2, but the incidence is highest in the middle of a child’s first 10 years of life.

 - A stroke may occur with a painful episode or an infection, but in most cases there are no related illnesses. Although recovery from a stroke may be complete in some cases, frequently the stroke can cause brain damage, paralysis, convulsions, coma and even death.

 - Up to two-thirds of children with SCD and stroke will have more strokes unless they’re treated.

 - Repeat strokes occur in at least 60 percent of the children who have already suffered one stroke. A repeat stroke causes greater brain damage and increases the risk of death. The 10% of children with sickle cell disease who are at risk for a stroke need ongoing blood transfusions to reduce their risk, according to a study at 25 sites in North America. To prevent recurrent strokes, blood transfusions are often given from a two to four week intervals.  It is not known how long these transfusions must be given to prevent another stroke from occurring.  Some are told they will be transfused the rest of their life!

 - The National Heart, Lung and Blood Institute of the National Institutes of Health, which funded the $11 million study headquartered at the Medical College of Georgia in Augusta, issued a clinical alert to coincide with the Dec. 5, 2004 announcement of study findings at the American Society of Hematology meeting in San Diego.

Transfusions can prevent a first stroke when the TCD is abnormal, and they can generally prevent second and third strokes in patients with SCD who have already had a stroke.2 A transfusion will help replace the sickled red blood cells in your child’s body with normal donor cells.  

When the first stroke occurs, most children get a transfusion to reduce the blocked blood flow caused by the sickle cells. After that, doctors suggest monthly transfusions due to the high risk of another.



- Too often I have found that there is difficulty finding matched BLOOD for African Americans sickle cell patients.  Although unusual matches can be found from other ethnic groups, in the end, giving blood and marrow is one thing as African Americans that we have to do for our own!


(More date can be provided)

[1] Cooperative Study of Sickle Cell Disease.                                                                                                  [2] STOP Study.  (NEJM 1998 reference and Medical College of Georgia Web site.)                                           [3] NIH Publication No. 95-2117, Revised December 1995 (3rd Edition) National Institutes of Health, National Heart, Lung, and Blood Institute.                                                                                                                        [4] Blood transfusion rate in congolese patients with sickle cell anemia                                                                                 [5] Children with sickle cell disease need ongoing transfusions to avoid strokes 

[6]  Sickle Cell Disease and Stroke Prevention in Children                                                                                         [7] Sickle Cell Disease

African-American Donors &  (CEK Negative)


The Importance of African-American/Black Donors

Sickle cell disease affects approximately 70,000 African Americans. The best match for an African-American/Black child with sickle cell disease usually comes from an African-American/Balck blood donor. While African Americans comprise nearly 13 percent of the United States population, they represent less than 1 percent of blood donors.

It’s important that blood donors reflect the ethnic diversity of the patients who receive their blood. Since children with sickle cell disease often need many blood transfusions, it is best for them to receive blood that very closely matches their own. Patients with sickle cell disease — primarily in the African-American community — are less likely to have complications from blood donated by African Americans.


Antigen Matched Blood   (CEK Negative)


It’s much easier to find C, E, K negative blood in ethnic groups with lower C, E, K rates

Only 22% of Caucasians are C, E, K negative

But, up to 55% of African-Americans may be C, E, K negative

C,E, K inherited from parents

Ethnicity (genetic makeup) determines what blood group antigens (like C,E, K) a person has.

In order to find CEK negative blood:    

A blood center would need to collect blood from 1140 people in the general population to find 250 CEK negative units

A blood center would need to collect blood from only 450 African-Americans to find 250 CEK negative units

The numbers from the following drives are examples of why we need every African American who can donate blood to do so:


First AME Church: 52% CEK negative (22/42)                   

Out of 42 donors 22 had CEK negative blood.                   


First AME Zion Church: 65% CEK negative (13/20)

Out of 20 donors 13 had CEK negative blood.       


*Holman United Methodist Church: 38% CEK (8/21) negative.

Out of 21 donors 8 had CEK negative blood.

*This Church has blood drives on a regular basis.  Thank you so much!


Often people look at those who are donating blood, and say to themselves, “Well, they are doing it, so I really don’t need to.”  Actually, you are very much needed.  If you can donate blood, please do and save a life!  At least see if your blood is CEK negative.  If it is, please become a Blood Buddy . . . .


It’s not only about SCD.  Those people who have CEK negative blood may also have CMV negative blood (who are only 15% of the population).  Their blood is also very much needed to transfuse the following:

Premature newborns

Cancer patients

Bone Marrow Transplant patients

Heart and Lung Transplant patients

SCID or Severe Combine Immune Deficiency patients

Understanding Antigens and Antibody

 Taken from: %20antibody/structure.html


Antibody Structure 



Antibodies are immune system-related proteins called immunoglobulins. Each antibody consists of four polypeptides– two heavy chains and two light chains joined to form a "Y" shaped molecule.

The amino acid sequence in the tips of the "Y" varies greatly among different antibodies. This variable region, composed of 110-130 amino acids, give the antibody its specificity for binding antigen. The variable region includes the ends of the light and heavy chains. Treating the antibody with a protease can cleave this region, producing Fab or fragment antigen binding that includes the variable ends of an antibody. Material used for the studies shown below originated from Fab.

The constant region determines the mechanism used to destroy antigen.  Antibodies are divided into five major classes, IgM, IgG, Iga, IgD, and IgE, based on their constant region structure and immune function.

 Antibody/Antigen Interaction – A Closer Look


 An antigenic determinant, a site on the antigen that the immune system responds to by making antibody, can frequently be one unique structure on the antigen. You can see where new antigen is added, but protrudes away from the hosts antigen surface. In  this view, the new antigen is circled. The antibody is not shown.   The following images show how this feature is important for the formation of a high affinity antibody-antigen interactions.



The antibody's forms an opening to surround the antigen's protruding (green). Hydrogen bonds (white) stabilize the antibody-antigen interaction. If the interactions between the antibody and antigen are negative, the result is the antibody will kill off the new antigen, therefore the body rejecting the blood from the transfusion.



Water molecules (light blue) fill in spaces between the antigen and the antibody. The water molecules contribute significantly to the binding energy by creating additional hydrogen bonds.




The Biology Project
The University of Arizona
Monday, June 12, 2000
Contact the Development Team
All contents copyright © 2000. All rights reserved.


FYI ~ So why don't we have "blue tag" blood in California?

From Children's Memorial Centor for Cancer and Blood Disorders (

2300 Children's Plaza, Chicago, Illinois 60614-3363, 773.880.4000, 1.800.KIDS DOC

 Sickle Cell Donor Program

The Sickle Cell Donor Program was started by Children’s Memorial Hospital and the American Red Cross to improve transfusion support for children with sickle cell disease. Just ask for a "blue tag" at any American Red Cross blood drive in the Chicagoland area, and your donation could help a child with sickle cell disease.

This Page in Review

 This page explains:  


Why it is so very important to get antigen or race matched blood?


So the person being transfused does not reject the blood.   


Why is it best if a patient on hypertransfusion therapy receives blood from blood buddies or buddy donors (5 or 6 people who the patient only gets blood from)?


If patients get blood from too many different blood donors, the chance of their body rejecting the blood becomes greater.


Why would a patient's body reject the blood from a transfusion?


Each time a person receives blood , the body reacts by creating antibodies to attack this "new unknown blood."   With every transfusion from a different blood donor, the body creates another antibody to attack the new blood.  So, antibodies add up in the patient's body each time they receive blood from different people.  Once that occurs, sooner or later the body will react by creating antibodies to kill off the newest antigen (protein) from another different person's blood "the newest transfusion", therefore rejecting the blood.  The only way to not reject the blood is to have the same antigens (proteins) that the body is already use to, so it won't make antibodies to fight off the new fluid!

That is why we need more African Americans Blood Donors who have (CEK Negative) blood to be Antigen Matched with a Sickle Cell Patient, and become one of their Blood Buddies!

This is one thing, as African Americans that more of us can do  ~  must do, to save the life of someone within our same race.