Lyric Porter is the third patient in the world to receive a novel stem cell gene therapy to treat her sickle cell disease. During the clinical trial and stem cell infusion, she received multiple whole blood and platelet transfusions, thanks to generous blood donors.
In a world where medical miracles can seem out of reach for sickle cell warriors, Lyric Porter stepped into uncharted territory and emerged victorious, armed with the silent support of countless strangers better known as “lifesaving blood donors”.
As the third patient globally and the first in Illinois to receive a groundbreaking novel stem cell gene therapy for sickle cell disease, Lyric's journey is a testament of human resilience, compassion and scientific innovation.
A Life Shaped by Sickle Cell
Diagnosed at birth with sickle cell disease, Lyric's early years were marked by frequent hospital visits and blood transfusions. Before she even turned five, she experienced her first sickle cell pain crisis, requiring a blood transfusion—a procedure that would become all too familiar in the years to come.
"I've had many pain crises that resulted in me needing a blood transfusion or red blood cell exchanges—anywhere from one to eight units of blood," Lyric recalls. "Typically, the pain would be unbearable. When your red blood cells are dying faster than they are regenerating, it causes extreme fatigue, low oxygen saturation and a host of other issues. The ability to receive blood products helped implement a way for me to do the things I enjoyed while also ensuring I maintained a stable hemoglobin level."
By the time Lyric slipped on her cap and gown to graduate from Florida A&M University (FAMU) in 2019, she had undergone hundreds of blood transfusions. It was then that her medical team at Comer Children's Hospital presented her with a lifechanging opportunity: participation in a clinical trial for a novel stem cell gene therapy.
A Leap of Faith
The decision to participate in the clinical trial was not taken lightly. Lyric weighed the potential benefits against the unknowns of a new treatment.
"It seemed more promising that I would essentially be able to use my own body to heal itself from frequent crises and other conditions that I'd been diagnosed with as a result of my illness," she explains.
Her decision was also influenced by the memory of friends who succumbed to the disease.
"I had experienced the loss of many close friends I'd connected with who also had sickle cell disease, but unfortunately died before the age of 25 and didn't live long enough to take advantage of such a lifechanging opportunity that would establish better health,” says Lyric. “I owed it to them as well as my family to at least give it a try."
The Journey to Treatment
The road to a novel stem cell gene therapy treatment was not without its challenges. The COVID-19 pandemic caused delays, stretching the clinical trial process to about two to three years. During this time, Lyric relied heavily on the generosity of blood and platelet donors.
“I was required to get a red blood cell exchange transfusion of at least seven units of blood monthly for over a year and a half (before stem cell collection),” says Lyric. “While hospitalized for the clinical trial and when the edited stem cells were infused, I had to receive a total of five or six whole blood transfusions. I also received platelet transfusions two to three times during the duration of my hospitalization as well.”
A New Quality of Life
The results of the gene therapy stem cell transplant have been nothing short of transformative for Lyric. Her hemoglobin levels have stabilized, and she has not needed a blood transfusion since being discharged from the hospital post-transplant.
Her improved quality of life extends beyond medical metrics. "I no longer have jaundice of my eyes and skin, and I've noticed I have better energy and do not get tired as easily," Lyric says. "I'm able to travel more comfortably and I'm not as sensitive to drastic weather changes."
Perhaps most significantly, the frequency and intensity of her pain crises have dramatically decreased. "I have only been hospitalized once in two years, whereas before I would get admitted to the hospital at least three or four times a year," she notes.
Joined by Blood
Blood and platelet donations are vital in supporting patients with sickle cell disease, people like Lyric undergoing gene therapies, stem cell transplants as well as those in need of regular blood transfusions to alleviate pain and help manage their disease.
A patient undergoing gene therapy for sickle cell disease may need as many as 50 units of blood and up to 25 units of platelets. Schedule a blood donation appointment today by visiting RedCrossBlood.org using the Blood Donor App or calling 1-800-RED-CROSS (1-800-733-2767).
Come give blood in October for a $10 Amazon.com Gift Card by email. Plus, automatically be entered for a chance to win a $5,000 gift card, there will be three lucky winners! Terms apply: rcblood.org/treat
Blood Donor Eligibility
A blood donor card or driver’s license or two other forms of identification are required at check-in. Individuals who are 17 years of age in most states (16 with parental consent where allowed by state law), weigh at least 110 pounds and are in generally good health may be eligible to donate blood. High school students and other donors 18 years of age and younger also must meet certain height and weight requirements.
Blood and platelet donors can save time at their next donation by using RapidPass® to complete their pre-donation reading and health history questionnaire online, on the day of their donation, before arriving at the blood drive. To get started, follow the instructions at RedCrossBlood.org/RapidPass or use the Blood Donor App.
About the American Red Cross:
The American Red Cross shelters, feeds and provides comfort to victims of disasters; supplies about 40% of the nation’s blood; teaches skills that save lives; distributes international humanitarian aid; and supports veterans, military members and their families. The Red Cross is a nonprofit organization that depends on volunteers and the generosity of the American public to deliver its mission. For more information, please visit redcross.org or CruzRojaAmericana.org, or follow us on social media.
Find a drive and schedule a blood donation appointment today.
