Understanding Mental Wellness and Survivorship

The Mind-Body Connection

Surviving a bone marrow transplant or gene therapy for sickle cell disease (SCD) is a major milestone—but it doesn’t mean the journey is over. Many survivors experience emotional and psychological challenges alongside physical recovery.

At Sickle Cell Prodigy, our programs are designed to validate those experiences and provide practical, evidence-based tools to support your mental well-being.

Common Mental Health Challenges After Curative-Intent Therapies

Depression

Rates of depression in adults with SCD average around 35%
Associated with worse quality of life and longer hospitalizations
Emotional responses to pain can predict depressive symptoms

Anxiety

One-third to one-half of people with SCD report anxiety
Often linked to fatigue, pain, and uncertainty about the future
Can persist even after disease-modifying or curative treatment

Emotional Challenges Unique to Survivors

Survivor’s guilt
Identity changes (“Who am I without sickle cell disease?”)
Anxiety about durability of cure or long-term outcomes
Post-traumatic stress related to hospitalizations or complications
Emotional highs and lows after treatment milestones
Insomnia and sleep disturbances

Where Survivors Often Get Stuck

Inflexibility

Feeling trapped by rigid thoughts (e.g., “I can’t try anything new”)
Holding tightly to fears or assumptions about limitations

Avoidance

Pulling away from:
- Activities
- Relationships
- Opportunities
- Interests

Both inflexibility and avoidance are understandable responses to chronic illness and trauma—but they can keep survivors from engaging fully in life.

A Message from Survivors, for Survivors

Your mental health is a critical part of survivorship. Healing is not just about blood counts or gene edits—it’s also about identity, meaning, and learning how to live fully after everything you’ve endured.

If you’re struggling, support is not a failure—it’s part of thriving.