Christen
Age: 24

Where do I even begin...I was diagnosed with sickle cell at birth, born prematurely 3 months early. Along with sickle cell disease I have cerebral palsy. My parents were told I wouldn’t make it through the night and if I did I’d be a vegetable, but God said otherwise. I have SC-type Sickle Cell disease, and thankfully I’ve had great doctors and hematologists from childhood up until now. I was a patient at St. Jude Children’s Research Hospital in Memphis, TN, and though they’re primarily known for treating cancer patients, they have an amazing clinic centered around Sickle Cell.

For me, my sickle cell journey was tougher to deal with during childhood. I didn’t know how to navigate my younger years in elementary and middle school living with sickle cell as well as cerebral palsy. Growing up I didn’t participate in certain activities because of my own insecurities and that certain things could possibly trigger a crisis for me. Growing up I mainly had crises during the night or in the early morning hours when the clinic at St. Jude was closed so I had to go to other ER’s a lot and deal with the long waits in the waiting rooms while being in excruciating pain. Because of SCD I also have had a few retina detachment laser eye surgeries and I have Avascular Necrosis in my knees. Fast forward to my early high school years, I was a lot more comfortable with myself and even discussing Sickle Cell to others in school. During this time I started to get ideas of ways to educate others about Sickle Cell and that’s when I started putting on annual concerts and using those shows to educate people about SCD as well as raise money for St. Jude.

During my last couple of years of high school I began to have crises much more frequently, to the point where I’d have to be admitted at St. Jude. Because of that I started taking hydroxyurea, which at the time was just a medication they were using for a study. Being on hydroxyurea I really didn’t have any major crisis for well over a year until the spring of last year when I had a few major crises back to back. Since then I decided to not take hydroxyurea unless my body tells me otherwise.

I’ll definitely say a positive from my journey is that God has given me a purpose to do things specifically for the Sickle Cell community. I have had the opportunity to share my story and potentially be someone who can inspire and encourage today’s youth living with Sickle Cell.