Hello, everyone! Thank you for taking the time to read this post. This website was inspired by my family friends. Their youngest child was diagnosed with Sickle Cell Disease shortly after he was born, and growing up was one extended trial by fire. I cannot count the times they would rush to the hospital in the middle of the night with the child being in extreme pain, or how many times he would be fatigued throughout the day and fall into an uncomfortable sleep. Growing up, he didn’t have anybody that he could relate to outside of his hospital visits, and his parents didn’t have anybody to talk to outside of the doctors and nurses that they relied on so heavily. With any luck, this website will serve as a community; a security network; and a forum to share with the world. I’m looking forward to hearing all of your stories – and seeing how you all contribute to this site to make it yours. Please take the time to explore all that this site has to offer, and if you want to share additional references, please don’t hesitate to message me so it can be added immediately.

Diagnosed with sickle cell disease, Shaniya came to St. Jude Children’s Research Hospital when she was 5 years old. Now 16, she strives to be a normal teenager, one not defined by her disease. Teens with this family of blood disorders, which includes sickle cell anemia, face challenges when transitioning from adolescent to adult care. St. Jude is working to reverse that trend with education, research, and partnerships with adult care facilities.

It goes without saying that St. Jude Children’s Research Hospital is making incredible headway into researching this disease; to donate to the nonprofit or to learn about the many other ways you can volunteer, please visit their site here. All other information provided by the Research Hospital can be found here; additional links will be added to our Resources compilation very soon.

In this video—presented by the National Heart, Lung, and Blood Institute, part of the National Institutes of Health—Nicholas H. and his mother, Bridget, talk about life with sickle cell disease. Nicholas was diagnosed with sickle cell disease soon after he was born. He suffered from hand-feet syndrome as a baby and had his gallbladder and spleen removed at age 5. Penicillin, hydroxyurea and other medicines have helped him and his family manage the illness and the severe pain crises that can result in hospitalization. Now 15 and an honor student in school, Nicholas enjoys “hanging out,” listening to music, playing video games, wrestling and learning Brazilian jujitsu.