Charly is a 32-year-old musician and sickle cell advocate. He is committed to overcoming the stigma of sickle cell by sharing his experience and inspiring others. His talent, determination, and ability to keep smiling shine through as Charly shares his experiences dealing with complications from sickle cell disease while pursuing his dreams.
“Sickle cell, it can hit you in any way… as I’m getting older, my bones have started to deteriorate.”
Understanding Avascular Necrosis
Charly experiences a symptom of sickle cell called avascular necrosis, which is when bone tissue starts to die because it isn’t supplied with enough oxygen. This can happen in individuals with sickle cell because their blood isn’t carrying enough oxygen to their body’s tissues. Avascular necrosis can be painful but often begins without pain.
Charly’s Truth: Creating Art From Pain
Charly’s music started as a way to escape the obstacles and challenges he faced with sickle cell but eventually became a way for him to connect with others and become more resilient. Charly’s music has become a healthy way for him to manage his sickle cell and to share his challenges and his triumphs with the broader sickle cell community and beyond.