Charly’s Story: For The Community



Charly is a black man in his 30s and is one of 6 siblings. He is the only sibling with Sickle Cell Anemia. He has had the condition since birth but didn’t learn much about it until high school when he started getting leg ulcers. Charly loved basketball and had dreams to become a professional basketball player, but because of sickle cell, he had to let go of that dream and his passion. 


Later in life, Charly pursued a degree and career in information technology (IT). However, he found that because of the constant pain, fatigue, overexertion, and prolonged sitting, he wasn’t able to hold down a full-time job so he had to let go of that as well.


Now, Charly is a musician and is involved in a sickle cell community of artists like himself. Charly is resilient and tackles challenges head on. He channels his pain and experiences into the music he creates. His partner also has sickle cell and they are able to truly understand each other. However, they have accepted the fact that they will never have children together. SCD can be isolating because there is little awareness and education about the condition. Charly wishes that there was more awareness and understanding for sickle cell not just in his personal life, but also in healthcare and hospitals. He believes that medical professionals should be more knowledgeable about the condition and its treatments.  


Charly had to give up so many parts of himself because of sickle cell disease, which is why he is dedicated to research with Sanguine. He is passionate about Sanguine’s mission of making sickle cell research opportunities more transparent and accessible, and spreading awareness about SCD. Charly wants to make a difference for the sickle cell community however he can because he hopes for a better quality of life for those battling the condition like himself. Charly hopes that one day, there will be a safe cure for sickle cell disease. 


By Neelem Sheikh