Memories of hospital visits are unfortunately aplenty for people like Quintissa who have sickle cell disease. Her memories go beyond those ambulance rides frequently undergoing tests and receiving regular blood transfusions to try to live a normal life with SCD.
According to the Sickle Cell Disease Foundation, sickle cell disease is the most common hereditary blood disorder in the U.S. More than 100,000 Americans have SCD, and they average two and a half hospital visits a year.
Minorities are particularly affected by genetic diseases. SCD occurs in one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births.
A person with SCD has abnormal hemoglobin (a protein in red blood cells that carries oxygen), which causes the red blood cells to become hard and sticky. They look like a C-shaped farm tool called a sickle.
Those cells can cause several issues in the body. They die early, which causes a constant shortage of red blood cells., and they also stick together and clog when traveling through small blood vessels.
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“It creates pain at that point, but if oxygen is cut off for too long unfortunately sometimes people will lose limbs or have organ damage from those cells clotting,” Quintissa said.
Other serious health complications such as infection, acute chest syndrome, and stroke can arise. These risks are an everyday reality for people like Quintissa who learn early in their lives how difficult the disease is to manage.
“I’ve lived my whole life with sickle cell,” Quintissa said. “I’ve learned to adjust and adapt to the different changes. Now, I’m noticing more fatigue daily. I have chronic pain now. When I was younger, I would just have these onsets of pain crises and then I wouldn’t really be sick any other time, but now it’s chronic. That low energy just drains you from doing a lot of things in life. I try to stay motivated thanks to family and friends, and my faith keeps me going a lot.”
The only cure for SCD is a bone marrow or stem cell transplant, which are risky and can have serious side effects. For most with SCD, one of the most effective treatments are frequent blood transfusions.
Quintissa’s doctor estimates that she has had more than 500 transfusions in her lifetime. She needed as many as 26 units in a year earlier in her life.
“I’m so grateful that people were able to give blood and that it was there when I needed it because there were plenty of times that were kind of touch and go where my life truly was in jeopardy,” Quintissa said. “Thanks to gracious donors for their support, I have made it this long.”
It was not long ago that the life expectancy for someone with SCD was in their 20s. Just six years ago, Quintissa ended up on a ventilator in a medically induced coma for six days after a sickle cell crisis.
She counts her blessings daily that she is still here and is an advocate for the hundreds of thousands with the genetic disease.
“(Blood donation has) really impacted my life in such a positive way,” Quintissa said. “I’m truly a living, walking, breathing representation of what donating blood can do. There is technology in the medical field now and they can make artificial limbs and they can even go in and edit your DNA, but blood, there’s no substitute for that. That has to come from a real, live, human body, a person who takes their time to come to donate. That just means the world to me.”
With Kentucky and the rest of the nation entrenched in a blood shortage for the last two and a half years due to complications from the COVID pandemic, Quintissa hopes more donors will step up to help fight a disease that affects so many.
“Even if I’m not going to receive this unit of blood, rest assured it's going to a person in need,” she said. “You could really be helping save a life.”