My Journey with Sickle Cell and a Life-Changing Experience
As we continue to spread awareness this Sickle Cell Awareness Month, I wanted to take a moment to share a personal story that almost ended my life—and shaped how I navigate living with sickle cell disease today.
It was during my early 20s, somewhere around the age of 22 or 23, when I found myself facing a challenge I hadn't fully anticipated. My hemoglobin levels were dangerously low, and for the first time, I was advised to undergo a blood transfusion. I was still in the process of transitioning from pediatric care to adult care, and everything felt uncertain and overwhelming.
At the time, I trusted the medical advice, and the transfusion was meant to help, but instead, it turned into something far more harmful than helpful. I later learned that my body carried an antibody that views transfused blood as foreign and attacks it. I cannot tell you how long I was hospitalized this occurrence. The hematologist who treated me was incredibly precise in recognizing this issue, and I'm grateful for their expertise. But the reality was that my body was fighting a battle I didn’t expect—a battle to heal, but without the ability to do so fully.
Painting is one of my outlets.
Showing my artwork at the annual walk held in Baton Rouge, LA, I was also a vendor, sharing educational information on sickle cell disease and trait.
This was a turning point for me. It made me realize that every warrior's journey is unique, and no two experiences with sickle cell are the same. There are moments of fear, pain, and frustration that only those living with the disease truly understand. And yet, there's also hope in knowing that as we share our stories, we bring more light to a topic that desperately needs it.
Since that experience, I’ve never had another blood transfusion. Thankfully, there are alternatives that have been used in my treatment since then, and I'm in a much better place because of them. But I continue to encourage every sickle cell warrior out there to share their journey—because we each have a story that can inspire, educate, and support others.
This is why education is so important. We must keep the conversation going, connect with others, and ensure that the world understands the complexity of sickle cell. As we meet new warriors, caregivers, and advocates along the way, we build a stronger community.
Sickle Cell Association of South Louisiana.
A couple of my friends, 3 warriors(including me, far right), and 1 supporter.
Stay tuned for more stories and join me in spreading awareness this month and beyond. Together, we rise.
- Whitney Carter
Founder, Red Stick Sickle Cell Group
Spread Awareness. Share Your Journey.