Advocating for Sickle Cell Warriors: Meet Ashley Reed

Sickle Cell Awareness Month

September 07, 2023

In honor of National Sickle Cell Awareness Month, AABB News is sharing stories of sickle cell warriors, a group of patient advocates and their loved ones, who are raising awareness of sickle cell disease.

Ashley Reed, a sickle cell warrior who was diagnosed with SCD at birth, nearly lost her life after giving birth to her son. A blood exchange transfusion saved her life. As an elementary teacher and mom, Ashley knows the importance of education. That’s why she strives to build awareness of SCD in her community and share how a diverse blood supply saves lives.

Learn more about Ashley's journey below. 

Gratitude and New Beginnings

“Donors truly save/give life with their donations.”

Ashley Reed, 32, was diagnosed with SCD at birth. The SCD crises she experienced throughout childhood often left her bedbound, impacting her social life and physical health. Although her genotype of sickle cell does not experience as many pain crises as other genotypes, Reed noted she still suffered with symptoms and complications from the disease.

“I was often not able to participate in sports activities because it would cause too much physical exertion that could result in a pain crisis. I also missed out on a lot of social activities at the beginning of the school year as a child,” she said. “As an adult, I have a better understanding of my body and my sickle cell. I am aware of what triggers my crisis – including dehydration and stress – and I am better able to prevent crises from happening by taking my medications and daily vitamins, staying active through daily exercise and making sure I eat food that is going to make me feel well physically and mentally.”

Reed experienced her most serious complication of SCD when she went into premature labor with her son in 2017 and underwent an emergency cesarean section after being in active labor for 36 hours. The physical stress of delivery, she noted, triggered a sickle cell crisis. Reed recalled feeling excruciating pain throughout her limbs in the recovery room. Then, her breathing changed.

“It felt like an elephant was sitting on my chest, and my body began to swell with fluid,” she recalled. “This was not pain from giving childbirth, but a pain I was very familiar with.”

Reed was transferred to the University hospital and diagnosed with acute chest syndrome and a deep vein thrombosis blood clot. She was placed in a medically induced coma and underwent a blood exchange transfusion. The procedure saved her life.

“More than 70% of the blood in my body had sickled and had to be exchanged out with 70% donor blood using an apheresis machine,” Reed explained. “I awoke from the medically induced coma nine days later and was finally able to go home with my son. I would continue to recover over the next three months, as I needed physical therapy, occupational therapy and some speech therapy to relearn how to be independent.”

Since having her son, Reed has undergone blood transfusions as a preventative measure before major surgery to prevent pain crisis and/or acute chest syndrome.

“My hematologist has determined that my body cannot handle the stress and exertion that comes with having surgery,” Reed said. “Before the preventative transfusions, I would be hospitalized for weeks from a surgery that should’ve only taken two to three days to recover from. Now that we do the preventative transfusions, I no longer have the crisis, and I can get home to my family and back to daily life sooner.”

Saving Lives

As an elementary teacher and educator, Reed understands the importance of equipping people with knowledge. She recommends raising awareness of SCD in the Black community as a first step in increasing donors.

“Black people need Black blood; more of us need to contribute to help us,” Reed noted. “I recommend making others in the Black community knowledgeable of the problem. I would also point out the different ways blood donations are used to save lives—sickle cell transfusions, gun violence, trauma victims, etc.”

Reed expressed her gratitude to ImpactLife and its Red4Life program for providing her with a platform to share a piece of her sickle cell journey. The initiative helps her advocate for other sickle cell warriors and bring awareness to the program, she added.

“Donors equal gratitude and new beginnings,” Reed told AABB News. “Without donors, I wouldn’t be alive today to watch my son grow. Donors truly save and give life with their donations.” 