Living Well with Sickle Cell

A Handbook for Parents & Caregivers

Living Well with Sickle Cell will give you the knowledge and confidence you need to take on a sickle cell diagnosis and advocate for your child’s health and well-being.

Sickle Cell Disease is well known for the pain that it causes. What isn’t widely researched is the emotional stress that families go through due to the unpredictable episodes of pain, hospitalizations, risk of death, and more. Treatment options are few, and curative therapies like bone marrow transplant and gene therapy are promising, but not yet widely accessible. We must do something now to protect those we love. Knowledge truly is power, education is the key, and advocacy is the force to defeat this disease. Living Well with Sickle Cell provides that knowledge and support. Together, we can provide the advocacy needed for a healthier future. Living Well with Sickle Cell will give you the knowledge and confidence you need to take on a sickle cell diagnosis and advocate for your child’s health and well-being.

"Living Well with Sickle Cell: A Handbook for Parents and Caregivers is an outstanding resource for families. We supply this handbook to every new family who comes to our sickle cell clinic. It is an extremely well grounded and helpful toolkit for what can otherwise be an overwhelming experience for families. This handbook is often used as a resource over the coming years. Every new family should have one!" 

--Dr. Cheryl A. Hillery, MD, Director of the Comprehensive Pediatric Sickle Cell Program at UPMC Children's Hospital of Pittsburgh

Written by the Children's Sickle Cell Foundation (CSCF).