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
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Rates of depression in adults with SCD average around 35%
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Associated with worse quality of life and longer hospitalizations
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Emotional responses to pain can predict depressive symptoms
Anxiety
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One-third to one-half of people with SCD report anxiety
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Often linked to fatigue, pain, and uncertainty about the future
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Can persist even after disease-modifying or curative treatment
Emotional Challenges Unique to Survivors
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Survivor’s guilt
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Identity changes (“Who am I without sickle cell disease?”)
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Anxiety about durability of cure or long-term outcomes
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Post-traumatic stress related to hospitalizations or complications
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Emotional highs and lows after treatment milestones
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Insomnia and sleep disturbances
Where Survivors Often Get Stuck
Inflexibility
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Feeling trapped by rigid thoughts (e.g., “I can’t try anything new”)
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Holding tightly to fears or assumptions about limitations
Avoidance
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Pulling away from:
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Activities
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Relationships
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Opportunities
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Interests
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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.
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If you’re struggling, support is not a failure—it’s part of thriving.