top of page

Pain Reprocessing Therapy for  Sickle Survivors

For many individuals who have received a bone marrow transplant or gene therapy for sickle cell disease, pain does not always disappear immediately—or completely—after treatment. Even when the disease process has been addressed, the body and brain may still be carrying the memory of years of pain, medical trauma, and heightened alertness.

​

Pain Reprocessing Therapy (PRT) is a therapeutic approach designed to help the brain “relearn” how to interpret pain signals, particularly when pain persists despite healing or disease stabilization. Importantly, PRT does not suggest that pain is imagined or “all in your head.” The pain is real—but in some cases, it may be driven by how the nervous system has learned to respond after years of threat and injury.

PRT focuses on retraining the brain to recognize when the body is safe, helping to interrupt ongoing pain cycles and support long-term healing.

How PRT Supports Post-Transplant and Gene Therapy Survivorship

PRT includes five core components, each adapted to the unique experiences of sickle cell survivors:

1. Understanding Pain After Curative-Intent Therapy

PRT begins with education about how pain can continue even after the body has healed. For people with sickle cell disease, the brain may remain on “high alert” after years of vaso-occlusive pain, hospitalizations, and medical stress. In this state, the nervous system can misinterpret safe signals as dangerous—creating pain even when there is no active tissue damage.

​

This pain is often described as a false alarm: the alarm is loud and real, but there is no fire.

2. Building Personalized Evidence That the Body Is Healing

Together with a trained clinician, individuals identify evidence that ongoing pain may not reflect active disease or injury. This may include:

  • Stable lab results and imaging after transplant or gene therapy

  • Pain that fluctuates with stress, emotions, or environment

  • Pain that appears without physical injury

  • Moments of relief during activities that once caused pain

 

Recognizing these patterns helps the brain slowly update its understanding of safety.

3. Learning to Relate to Pain Through a Lens of Safety

A key PRT technique—often called somatic tracking—helps individuals gently observe pain sensations without fear. Rather than trying to fight or suppress pain, survivors learn to notice sensations with curiosity and reassurance, reinforcing the message that the body is no longer under threat.

 

This can be especially empowering for individuals relearning trust in their bodies after intensive medical treatment.

4. Addressing Emotional and Medical Trauma

Living with sickle cell disease often involves prolonged stress, fear, and medical trauma. PRT recognizes that emotional threats—such as anxiety, grief, self-pressure, or unresolved trauma—can keep the nervous system activated.

 

Therapy may include safe ways to process these experiences, helping the brain shift out of constant “danger mode.”

5. Reconnecting With Safety, Relief, and Positive Sensations

PRT also helps individuals reconnect with moments of ease, comfort, and positive bodily sensations—many of which may have been overshadowed by years of pain.

 

Learning to notice safety, calm, and pleasure supports the nervous system in recalibrating toward healing and stability.

A Complementary Tool for Survivorship Care

Pain Reprocessing Therapy is not a replacement for medical care, and it is not appropriate for pain caused by active disease or medical complications. Instead, it can serve as a complementary support tool for sickle cell survivors who are navigating persistent pain after curative-intent therapies.

 

For many, PRT offers a way to move forward—helping the brain and body learn that healing is not only possible, but ongoing.


Books:

Pain Reprocessing Therapy Resources

bottom of page