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Quintissa’s Rare Disease Story in Honor of World Blood Donor Day

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By Quintissa P.

My name is Quintissa and I was born with sickle cell anemia. As a result of this condition, my hematologist has estimated that I’ve received well over 500 pints of blood throughout my 42 years of life! 

I’m from a small, former coal-mining town called Neon, nestled in the mountains of southeastern Kentucky. Diagnosed at 11 months old, I was the only person in my town and in my family with sickle cell disease (SCD). My parents are both only sickle cell trait carriers, and I inherited both of their traits and ended up being born with SCD (Type SS), more commonly known as sickle cell anemia. SCD is a genetic disorder that affects red blood cells. Healthy red blood cells are round and full of oxygen. For a person with my condition, just as the name implies, many of the red cells are shaped like the gardening tool by the same name. I usually describe it as being shaped like a crescent moon or a banana.  

Living with sickle cell anemia has definitely had its challenges. The unpredictable nature of the illness can be frustrating, especially when trying to enjoy a normal life. Painful episodes, called a pain crisis, occur when many red blood cells start to “sickle” and get stuck together in blood vessels. Oxygen and fluids can’t pass through, causing extreme pain to occur anywhere throughout the body. The intensity of the pain ranges from mild to very intense, and can last a few hours, several days, or even up to a few weeks. If oxygen is cut off for too long, it can potentially cause organ damage or even worse.  

Blood transfusions are critical for sickle cell patients because they increase the proportion of healthy red blood cells in the bloodstream relative to sickle cells, which improves the blood’s oxygen-carrying capacity, according to the NIH

I am truly passionate about advocating for both SCD and blood donation. The two go hand-in-hand for me, and the need for awareness is always there. I share my story in hopes of inspiring and helping others. Not only am I educating others about sickle cell disease, but I’m also educating others on the importance of blood donation. Many people aren’t aware of how just one blood donation can potentially save up to three lives! My 500+ blood transfusions have literally saved my life, and I’m so grateful for each and every one! Blood donors keep me and so many other patients going. Whether it’s due to SCD or any other health condition, so many patients rely on the selfless acts of faithful blood donors. 

As a child growing up in the 1980s, life expectancy for people living with SCD wasn’t very long, with many people passing away by their early 20’s. Thanks to modern medicine and technology, sickle cell warriors are now thriving well into their 70s and beyond! Although there isn’t a universal cure for sickle cell disease, there are plenty of treatment options. Currently, there are many effective medications on the market for adolescents and adults. Bone marrow transplants and gene editing have also been effective therapies for those patients meeting the criteria. The future looks very optimistic! 

Today is World Blood Donor Day. Donate blood today to help improve the lives of patients like Quintissa with sickle cell disease or other rare conditions. Learn more about finding a blood donation location near you today.