Survivorship
Survivorship is more than just living without sickle cell disease; it’s about reclaiming your life and nurturing every aspect of your well-being after treatment.​​
Who is a 'Sickle Survivor'?
A Sickle Survivor is anyone who has participated in a transformative therapy — such as a bone marrow transplant or gene therapy — and is redefining life beyond sickle cell disease in all its forms.
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The term embraces a wide spectrum of experiences:
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Those who have achieved successful treatment outcomes and are redefining what life looks like post-cure.
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Those managing post-treatment complications such as graft-versus-host disease (GVHD), chronic fatigue, iron overload, hemolytic anemia, or organ damage.
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Those who have experienced failed or partial therapies but continue to embody strength, resilience, and hope in the face of uncertainty.
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Being a Sickle Survivor means more than surviving — it means continuing to heal, to adapt, and to thrive through every phase of recovery. It recognizes that each story is unique, and that healing after transformative therapy is both a medical and emotional journey.​
Sickle Survivors are pioneers of a new era in care — individuals learning how to live fully after “curative-intent" treatments, while acknowledging the ongoing physical, emotional, and social transitions that come with survivorship.
Our Approach to Survivorship Care
Whole-Person Wellness
Peer & Community Connection
Continued Education & Support
We take a holistic approach to post-therapy care — supporting not only your body, but also your mind and spirit. Our wellness resources focus on long-term physical health, mental well-being, and lifestyle habits that foster lasting recovery.
Healing is stronger in community. Through our Survivorship Circle, patients and caregivers are connected with mentors, wellness professionals, and peer advocates who understand what life after therapy truly feels like. Together, we share insights, celebrate milestones, and build a sense of belonging beyond treatment.
Life after the "cure" often comes with new medical needs, follow-up schedules, and emotional transitions. Our survivorship resources simplify the process — helping you track your recovery, manage side effects, and stay informed about ongoing care.
Let’s talk survivorship — because life after treatment deserves just as much care, compassion, and celebration as the journey to get there.
