Sickle Cell Resources
Are you the Sickle Cell Hero we've been searching for? Learn how you have the potential to be someone's hero.
Whart is Sickle Cell Disease?
What is a Sickle Cell Hero?
What happens if I am a Sickle Cell Hero?
Marrow and Cord Blood Treatment
You could be their hero...
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.”
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.
Sharee Greene was diagnosed with Sickle Cell at six months old.
At only ten years old, complications from Sickle Cell Disease caused Sharee Greene to have a stroke. Her mother rushed her to the hospital where doctors discovered she was in need of a blood transfusion.
Persistent seizures meant frequent hospitalizations for Sharee, and regular blood transfusions were a part of her treatment. “It would be once a month, or every two weeks,” she said.
Now 34, Sharee has achieved her goals of graduating college and becoming a published author. These achievements would not have been possible without all the people who donated blood. “I would not have been able to go to college and be successful in life,” she said. “I want to thank the blood donors for giving the Sickle Cell patients blood and helping us live our lives.”
Samuel Rivers gets a special feeling whenever he sees a LifeSouth Bloodmobile.
Samuel, 40, was born with sickle cell disease, and transfusions are a way of life in coping with the hereditary condition. For the past 13 years, he has received a transfusion every four weeks, and more times than he can count, that blood has come from a LifeSouth donor. Without them, he says, he never would have reached his 40th birthday and be able to raise his son.
Through a special program called Sickle Cell Heroes, LifeSouth looks for these donors whose special blood type causes fewer complications for sickle cell patients and others who receive numerous transfusions.
What is Sickle Cell Disease?
Sickle Cell Disease (SCD) is a genetic blood disorder that affects the boy’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.
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.