Guest Voice: How we care for the people who survive sickle cell disease
Advanced treatments have created new questions that didn't exist a decade ago
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When I received a stem cell transplant in 2019, I was given something I had dreamed about for more than three decades: the chance to live without sickle cell disease.
My brother was my donor, and because he was a perfect match, the transplant process was a success. For the first time in my life, my body began producing healthy red blood cells, and my hemoglobin level was above 12, which is within the normal healthy range. The pain crises stopped and so did the hospitalizations. Acute chest syndrome, a dangerous condition in which sickle cells remain stuck in the blood vessels of the lungs, became a part of my past.
By every clinical definition, I was cured.
What I wasn’t prepared for was everything that came after receiving this functional cure. For 31 years, sickle cell disease shaped every aspect of my life. It wasn’t just the pain crises or the emergency room visits; it was also the cumulative damage caused by decades of living with debilitating chronic illness.
Long before my transplant, I had already developed avascular necrosis in my right hip and both shoulders. Years of chronic blood transfusions left me with iron overload that continues to affect my liver, pancreas, and heart. Those complications haven’t disappeared simply because my blood changed.
The disease may have been cured, but the damage caused feels like a lifelong battle.
Changing my relationship with pain
One of the biggest misconceptions surrounding bone marrow transplantation and gene therapy is that treatment marks the end of the journey. In reality, for survivors like me, it’s the beginning of an entirely new chapter — one that the healthcare system is only just beginning to understand.
I’ve experienced firsthand what happens when providers see “post-transplant” in one’s medical record and assume the story ends there. I’ve had to explain that while I no longer have sickle cell disease, I still live with the long-term effects of having had it for more than three decades. I’ve watched providers struggle to reconcile how someone who has been “cured” can still experience chronic pain, fatigue, mobility challenges, and other lasting complications.
Too often, survivorship falls into a gray area. We’re no longer treated as someone living with sickle cell disease, but there are very few healthcare systems equipped to care for someone living beyond it.
Over the past six years, I’ve learned that healing is far more complex than I’d realized. I’ve spent years trying different approaches to manage my ongoing battle with chronic pain. While medications addressed pieces of the puzzle, one of the most transformative experiences for me has been learning about pain reprocessing therapy.
After living in survival mode for most of my life, my nervous system has become conditioned to anticipate pain. Even after the disease is gone, my brain and body haven’t immediately recognized that the danger has passed. No one tells you that when the pain crises stop, the alarm system doesn’t always know how to stand down.
Pain reprocessing therapy gave me something I hadn’t found elsewhere: a framework for understanding how years of living with chronic illness affect the nervous system and practical tools to begin retraining it.
It hasn’t eliminated every ache or reminder of what sickle cell disease left behind, but it has changed my relationship with pain. More importantly, it has reminded me that healing isn’t measured solely by laboratory values or clinical outcomes.
As exciting as this new era of curative therapies is, we must broaden our definition of success. Success isn’t simply surviving the transplant or completing gene therapy. Success means understanding what patients need years after treatment.
For survivors, success feels attainable when health systems invest in long-term survivorship care, mental health support, rehabilitation, chronic pain management, and patient-reported outcomes.
It means asking a different question — moving away from “Did the treatment work?” to “How is this patient doing five, 10, and 20 years after treatment?”
Today, there is a growing community of transplant and gene therapy survivors living with questions that didn’t exist a decade ago. We are among the first generation to navigate life after curative therapy, and our experiences have an opportunity to shape the future of survivorship care, not only for sickle cell disease, but for every condition entering the era of cell and gene therapy.
I often say that my transplant gave me a second chance at life, but survivorship has taught me that healing doesn’t happen overnight. Nearly seven years later, I’m still healing. And perhaps that’s the conversation we need to be having now — not just how we cure disease, but how we care for the people who survive it.
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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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