Mile 48

Shortly after birth, Ambrose was diagnosed with Hemoglobin SS (HgbSS), the most severe form of sickle cell disease. This inherited blood disorder impairs the structure and function of hemoglobin, a protein that carries oxygen to the body in red blood cells. The abnormal hemoglobin alters the shape and function of red blood cells, which are normally circular and move smoothly through the bloodstream. However, in individuals with sickle cell disease, red blood cells are crescent-shaped. As they travel through the bloodstream, they can stick together and clog blood vessels, resulting in reduced blood flow to the body. This can trigger pain crises in the affected organs and tissues.

“I would always compare myself to other people,” said Ambrose. “Because of my inherited blood disorder, I would tire more quickly than most people. It was so frustrating when I couldn’t match the energy levels of other children. But I eventually learned to accept and embrace my uniqueness.”

“I felt tired all the time,” said Ambrose. “I also experienced chills, fevers and shortness of breath. As a kid, I had a lot of upper respiratory infections, and I couldn’t play contact sports. I wanted to play football but my mom didn’t allow it. If I got injured, it would take a longer time for me to heal. For people with no sickle cell, they might recover in a day or two. For me, it would take several weeks.”

The most difficult part of the disease was the pain crises, which struck without warning. Ambrose, in his 20s, has learned how to take better care of himself and control his symptoms – thanks to the pediatric hematology team at Manning Family Children’s. “They not only treated my illness, but educated me on sickle cell disease, and what I needed to do to manage my illness and symptoms so I can live a normal life,” said Ambrose. As part of his treatment, he takes hydroxyurea, a medicine that helps increase the production of fetal hemoglobin and prevents the formation of sickle-shaped red blood cells. Additionally, he takes penicillin daily to prevent infections, and folic acid, which aids in the production of red blood cells.