Earline Washington is a no-nonsense survivor of a blood disorder that affects approximately 100,000 Americans and occurs in about one of every 365 African-American births.
The Vance resident may not be ready to pen her own sickle cell disease survivorship guide, but she has learned the basics of how to stay as healthy as possible with a disease that can cause slow growth, tiredness, irritability, jaundice and difficulty breathing.
SCD is an inherited disease of the hemoglobin, which carries oxygen within red blood cells. In sickle cell disease, defective hemoglobin causes the red blood cells to become stiff instead of flexible and to form a sickle, or a crescent.
The Centers for Disease Control reports that pain is the most common complication of SCD and is the main reason that people with SCD go to the emergency room or hospital. When sickle cells travel through small blood vessels, they can get stuck and clog the blood flow. This causes pain that can start suddenly, be mild to severe, and can last for any length of time.
Washington, 69, realizes that most individuals with SCD don’t live as long as she has, but she is grateful for life and has enjoyed spreading awareness and giving back to her community as a member of the Orangeburg Area Sickle Cell Anemia Foundation.
“I would consider it a miracle. I know that it’s because of prayer and keeping a close contact with God. It’s most definitely my faith,” Washington said.
The non-profit foundation, chartered in 1976, has an office at 825 Summers Ave. It serves the six-county area of Aiken, Allendale, Bamberg, Barnwell, Calhoun and Orangeburg.
Washington served as its first secretary in 1974, when the group was formed with the mission to assure that all South Carolinians had adequate information and access to appropriate screening, diagnosis and treatment for sickle cell conditions.
She is also a member of Palmetto Health Richland’s Sickle Cell Disease Committee.
Washington said it’s been a “great” experience working with the foundation, especially its president Isaac “Ike” Haigler, who she said has shown members and others with SCD the care and attention they deserve.
Haigler said Washington is a rarity since most SCD patients die early or don’t live far beyond their early 50s.
“I think it’s the way she takes care of herself. Sometimes sickle cell patients just want to give up because of all the transfusions, removal of the spleen and other things they go through. But Ms. Washington has the determination to live another day.
“I think this is the thing that keeps her going and recently there’s also been a new medication called hydroxyurea that is causing sickle cell patients to live longer and more comfortably than in the past,” Haigler said.
The foundation president also said the Sickle Cell Disease Committee is meeting with state legislators to get the state to formally designate a Sickle Cell Day and to get a national registry of sickle cell patients and “have funds available to ease burdens and get more funds for research.”
In the meantime, Haigler said Washington is a relentless fighter who is committed to the foundation.
“She works hard at the foundation. She tries to do everything she can whenever she can. She came directly from the hospital to the walk last year with pillows and stuff in her car. That’s the kind of person she is when it comes to sickle cell,” Haigler said.
Washington said, “I would love to see more people interested in knowing that sickle cell disease is, but it has to be them that want to know.”
The foundation has had SCD walks in Orangeburg to work to promote more awareness of the disease, and “we just started a walk down in Vance,” she said.
While she refuses to let the pain of SCD stop her from living, the disease has presented its challenges.
A sickle cell crisis occurs when the sickle-shaped red blood cells don’t flow as easily and can get stuck in the small blood vessels of a person’s chest, belly and joints. The stuck cells slow or totally block blood flow, prohibiting oxygen from getting to some parts of the body and resulting in intense pain that lasts anywhere from a few hours to a few weeks.
“The pain is probably 10 times worse than a toothache. The pain is all over, but the majority of mine is from the hip down,” Washington said.
“It has really been tough living with sickle cell disease. A lot of times you have symptoms all day, every day. Some days are better than others. As the pain gets worse, you do get to a point where you can’t control it at home. Then I know I need to go to the hospital or to the infusion room to get treatment,” Washington said.
Washington takes two medications, including morphine, to control her condition and sometimes visits an infusion center in Columbia, which provides comprehensive care including, but not limited to, pain management, education and social services.
She also credits the love and support of her parents, the late Dorothy and Wilson Davis, in helping in her survival of a disease which eventually took the life of her brother, Ralph.
“They were very loving and caring. My mom always said she would hope that she could take the pain away when I was really having a bad crisis. She wanted to do something. She was the only one who could touch me when I was in crisis. Her hands were so light that they didn’t put pressure on me,” she said.
Along with Haigler, former Orangeburg County Sheriff Vance Boone also lauded Washington’s work ethic despite her illness. Washington started off as a file clerk in Boone’s office before going on to serve as his secretary for 19-1/2 years.
Washington said she was the first African-American commissioned deputy and also organized a sheriffs’ secretary organization.
Boone said, “Earline was top notch. When I put her to work, she just got into everything. She took on with everybody and everybody liked her, but she was very dependable. About the only time she was ever out was with sickle cell (complications). She’d have to be out for a couple of days, but she’d right back to work. She was very dedicated to the county.”
Dr. Julie Kantor is director of the Sickle Cell Disease Research Center at the Medical University of South Carolina in Charleston. She is also Washington’s doctor.
Kantor said while SCD has been known about since 1910, effective intervention methods have been slow in the making.
“The best early intervention that has made a difference is actually newborn screening, which allowed us to identify children affected by the disease early on and to provide education and counseling to affected families. By doing that, we’ve increased the survival in children from about 50 percent of children dying before they were age 5 to 99.9 percent survival,” Kantor said.
She added, “We do some things to help, but it’s all preventative care as well as educating patients on when they do need to come in and seek additional care and when something could be wrong.
“So with the adults like Ms. Earline, it’s just as important that we now continue to what we call maintain wellness. A long time ago sickle cell was all about just managing the acute crisis and pain. But now that we’re so much better at taking care of the disease, we can actually have a ton of impact if we just try to keep everybody healthy just like you would with diabetes or hypertension.”
Kantor said there is still a lot more to learn about SCD.
“We finally have some interest and some funding through pharmaceutical companies that are working on drug development. So we’re finally going to really have drugs that actually can significantly improve outcomes. So I think it’s going to be that much more important that we really talk about how important it is to know that you need to come in even if you feel and not wait until you’re sick,” she said.
Kantor added, “When you look at Ms. Earline’s age - despite the fact that up until recently she was still smoking - she’s really done a good job of self-management. She’s rarely in the hospital, tries to manage everything but the really bad stuff at home and that’s something that we really try to teach a lot of our patients.”