One in 365 African-Americans are born with Sickle Cell Disease. Learn how you have the potential to be someone's hero.
What is Sickle Cell Disease?
What is a Sickle Cell Hero?
What happens if I am a Sickle Cell Hero?
Marrow and Cord Blood Treatment
What is Sickle Cell Disease?
Sickle Cell Disease (SCD) is a genetic blood disorder that affects the body’s red blood cells.
Healthy people have disc-shaped red blood cells, but people who have SCD have blood cells that tend to change to a crescent shape. These thin sickle-shaped cells have difficulty passing through tiny blood vessels.
The symptoms of SCD can range from fatigue and breathlessness to unbearable pain that comes with the swelling of the joints, hands and feet. Stroke, liver disease and delayed growth are just a few of the complications it can trigger.
What is a Sickle Cell Hero?
Sickle cell patients may need many blood transfusions in a lifetime, some as frequently as every four weeks. However, multiple transfusions can cause complications. To reduce complications, finding donors whose blood types more precisely match these patients is crucial.
We call these donors Sickle Cell Heroes.
They save the lives of those affected by the disease and greatly reduce the negative effects of the multiple transfusions patients need to survive. Transfusions can increase the amount of healthy red blood cells in the blood stream and lessen the effects of the sickle-shaped cells.
How do I know if I am a Sickle Cell Hero?
Donate blood with LifeSouth, and your blood will be tested to see if you are a special match for a patient with sickle cell disease. SCD predominately affects African-Americans. Since matches are much more likely to be found within a patient’s own ethnic group, African-American donors may be the best hope for patients with SCD. Diversity is the key to successfully matching blood donors to the patients who need them.
What if I am a Sickle Cell Hero?
If you are notified that you are a Sickle Cell Hero, we strongly urge you to donate as often as you can. Sickle cell patients who receive frequent transfusions are in need of special blood like yours.
Because the blood they receive will come from a Sickle Cell Hero, the possibility of complications or reactions to their blood transfusions will be much lower. This can mean more successful treatments, and it can also lessen the likelihood of strokes for sickle cell patients.
You could be their hero...
"Donate. Please. We need you!"
When Mario Hendricks was a child, he didn’t know he had sickle cell disease, but he noticed a difference between himself and his friends. “I had friends who played sports all the time, and I could never play,” he said. “I’d be stuck inside, looking out the window. I never really knew why.”
Then one day at school, Mario had an episode of severe pain that caused his knees and back to lock up. “I didn’t know what I was experiencing. I actually had to be carried out of the school and the ambulance was waiting to take me to the ER, and that’s when it came to light that I had sickle cell disease,” he said.
Mario explained that the effects of the disease are more than just its physical symptoms. “It’s a very debilitating disease, especially emotionally. Running and playing with your friends, to be told you couldn’t do that anymore…you just have to stay positive, that’s what I try to do every day.”
Over the years, Mario has learned to manage his sickle cell disease. He emphasized that, with treatment, sickle cell patients can live a typical life. “There’s no cure, but there’s always hope. I went to college, got married, I had kids. I live a normal life outside of activities that I can’t do on a personal level.” He has received numerous blood transfusions throughout his life to treat the symptoms of his sickle cell disease. “The blood that we receive is a lifesaver, a game changer. It’s almost like the Energizer bunny. It recharges you,” he said.
Mario says that the need for a diverse blood supply is especially important for sickle cell patients, who require special antigen-matched blood to avoid complications from transfusion. These matches are most likely to be found with a donor from a similar ethnic background. “I had an experience where my body rejected some blood,” he said. “That’s why we push so hard for African-Americans to donate blood, because this is a disease that predominantly affects African-Americans. Donate. Please. We need you.”
Elijah is a sickle cell fighter, but his fight still has a long way to go.
A month after Elijah Cook was born he was diagnosed with sickle cell anemia. An inherited blood disorder that causes normally round and flexible red blood cells to become stiff and crescent shaped, sickle cell anemia leaves blood cells unable to travel through the body and deliver oxygen.
There are many symptoms and complications due to sickle cell such as stroke, organ damage, episodes of pain and aplastic crisis, where your body stops producing red blood cells.
Eli is a fighter, but throughout his life will need to receive multiple blood transfusions to prevent and manage his symptoms. Since matches for transfusions tend to be found within the patient's own ethnic background, black and Africa-American donors may be Elijah's best hope.
"After I get blood, I can clean the whole house!"
Like many disorders, the effects of sickle cell disease can vary widely from patient to patient. For LaDonna Jordan, the painful and life-threatening symptoms associated with sickle cell disease began at age seven. Her father tried to wake her for school, but found her unable to get out of bed. “I was awake but I couldn’t move,” she said. “My eyes were rolling in the back of my head.” A visit to her pediatrician revealed a fever of 104. LaDonna was rushed to the emergency room.
The emergency room staff worked hard to bring down the fever. “The doctors were scared. They couldn’t break my temperature. They gave me ice bath after ice bath and it finally came down,” she said. LaDonna was hospitalized for three weeks with Acute Chest Syndrome (ACS), a common disorder for children with sickle cell disease. ACS affects the lungs, causing serious infections and decreased pulmonary function.
Frequent hospital stays are, unfortunately, a reality for patients with sickle cell disease. Over the years, LaDonna has been hospitalized for three blood clots in her lungs, two bouts of pneumonia, several surgeries and chronic pain. “When I go through a crisis, it’s like a throbbing pain that goes from my back to my head. It’s like a heartbeat,” she said. “You have to take care of it right then and there because if you don’t take care of it, it spreads. It’s like wildfire.”
LaDonna says that receiving a blood transfusion makes an enormous impact on how she feels. “Before I receive blood, I’ll be in a whole lot of pain. After I get the blood, I feel back to normal,” she said. “If I don’t have blood, I feel tired and I don’t want to do anything. After I get blood, I can clean the whole house!”
She encourages those who may be thinking of giving blood to take that first step. “You never know, one day it could be you or someone in your family. It’s very important to donate.” LaDonna is grateful for the LifeSouth donors who take the time to give blood. “I would like to thank each and every one who goes out and donates blood because it helped me and it can help someone else. Thank you.”
When Kayla Ann Jernigan was born, her parents learned they carried the trait for Sickle Cell.
Soon after Kayla Ann Jernigan was born, she was diagnosed with Sickle Cell Disease (SCD), a hereditary blood disorder in which abnormally shaped red blood cells cause blockages in the blood vessels. In addition to causing complications like fatigue, infections and organ damage, these blockages can cause a severe episode called a pain crisis, brought on by a lack of oxygen to nearby tissues. Kayla experienced her first pain crisis when she was just five months old.
Kayla received her first blood transfusion at age eleven. Since then, she has received regular blood transfusions every few months. “For us, it’s really vital,” she said. It’s amazing. I’m (a) ten times better Kayla. I feel like I can do everything when I have a blood transfusion. I feel like a regular person.”
Now 24, Kayla works with the Sickle Cell Consortium to educate her community about SCD. Without LifeSouth blood donors, Kayla said life would not have been possible. “If I was unable to get a blood transfusion, my life would have been so totally different,” she said. “I don’t think I would have made it.”
Marrow and Cord Blood Treatment
For some patients, usually children, a transplant of bone marrow or cord blood offers the possibility of curing SCD.
The donor must closely match the patient’s tissue type for a transplant. Patients from racially or ethnically diverse backgrounds often have uncommon tissue types. According to the National Marrow Donor Program, a patient’s likelihood of finding a match on the Be The Match Registry ranges from 76 percent to 97 percent, depending on race or ethnicity. African-American patient have an estimated 76 percent likelihood of finding a match on the registry – meaning they are least likely to find a match.
By increasing the number of minority marrow donors and cord blood units on the registry,minority patients will be more likely to find a match. By joining the registry, you may be called to donate marrow to any patient in need of a transplant. Contact your local LifeSouth center if you are interested in joining the registry.