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Family with Sickle Cell Gives Back to Others with Disease

patient with sickle cell disease care packageMother and daughter Lillie Thomas-Daugherty and Jessica Smith both struggle with sickle cell disease, but have made it their life’s work to give back to others with the same illness. In September, in recognition of National Sickle Cell Awareness Month, Thomas-Daugherty delivered 30 care packages to sickle cell patients at Emory Decatur Hospital and Emory Hillandale Hospital.

Thomas-Daugherty’s motivation for creating the care packages was based on her family’s life-long journey with sickle cell disease. She hopes to raise awareness of the disease and its unique challenges so that sickle cell patients receive the medical attention and care they need.

“My daughter was hospitalized 17 times before her third birthday,” says Thomas-Daugherty. “She was in and out of the hospital regularly for blood transfusions or to receive medications to ease her pain. I nearly lost her, but she’s a fighter and I consider her my warrior.”

Sickle cell disease (SCD) affects millions of people worldwide. Although it is not a well-known disease, people who live with SCD may have a lifetime of pain and other health problems.

“Our hospitals are committed to heightened awareness of sickle cell disease and the ongoing education of our patients, families, staff and providers. This allows for appropriate medical evaluation, timely intervention, and prevention of painful complications. More importantly, our commitment lends itself to the respectful and compassionate care that our sickle cell patients desperately need and deserve,” says Shunda Harper, executive director, Emergency Services at Emory Hillandale Hospital.

People who have sickle cell disease are born with it. This chronic disease affects approximately 90,000 to 100,000 Americans. The abnormal red blood cells are shaped like crescent moons which blocks normal blood and oxygen flow in the body. This may lead to repeated organ damage, harmful infections, stroke, and intense pain episodes.

When a pain episode happens, it can be felt deep down in the bones or joints. “One minute you’re fine and the next minute you’re being rushed to the hospital,” Thomas-Daugherty explains. To minimize the episodes, “I’ve taught Jessica how to advocate and take care of herself, eat well and drink water.”

“The best way to live a full life and enjoy most activities is to stay as healthy as possible,” says Dr. Bob Dent, vice president, Patient Care Services, and chief nursing officer.
“Even after doing all you can to care for yourself, it is very important to plan to get help immediately when there is a problem,” continued Dent.

Thomas-Daugherty’s daughter Jessica Smith is now 31 years old and has two daughters of her own, ages 11 and 8. One of her daughters has sickle cell disease and the other carries the sickle cell trait. Smith is pursuing a degree from Georgia State University and works full-time, but continues to have health challenges. Sometimes, she gets tired walking even short distances. She continues to get blood transfusions because sickle cells die quicker (within 10 to 20 days) than normal blood cells (up to 120 days), leaving her extremely fatigued.

Thomas-Daugherty encourages people in the community to donate blood so sickle cell patients may receive blood transfusions when needed. She also wants caregivers to understand the disease and treat sickle cell patients with compassion.

“We are individuals with different sickle cell needs and challenges,” expresses Thomas-Daugherty. “I’m advocating for adult sickle cell patients who don’t have someone to speak for them.”

In her book, In The Midst Of A Sickle Storm, Thomas-Daugherty shares her experiences and provides insights and information on how to cope with sickle cell disease. Proceeds from the book allow her to provide care packages for sickle cell patients. In September, Thomas-Daugherty’s 30 care packages were given to adult sickle cell patients at Emory Decatur and Emory Hillandale Hospitals. The care packages include adult coloring books, hygiene items and words of encouragement.

“I want them to know they’re not alone,” says Thomas-Daugherty.