Sickle Cell Resources

Sickle Cell: About ·  Types & Complications ·Trait   En Español

Videos

Living with and Managing Sickle Cell Disease

• Nicholas (15 years old) and his mother talk about life with sickle cell disease. 
• Tiffany, a mother and student, talks about coping with sickle cell disease.
• Mental Health Journey with Sickle Cell Disease features a patient with SCD and his mother discussing their mental health journey with sickle cell disease and resources that helped them. 
• Sickle Cell Options Video Library shows individuals with sickle cell, caregivers, stakeholders, and healthcare providers.

Transitioning Stories

• Kevin’s Decision is about a young man's decision on whether or not to take his medicine.
• Calvanay’s Advice encourages self-advocacy when searching for an adult healthcare provider.

Sickle Cell Specialists in Texas 

• Pediatric Hematology Consultants (PDF)
• Genetic Services Provider List

Educational Information 

American Society of Hematology 

• Information for individuals with sickle cell disease
• Resources for Clinicians

Centers for Disease Control and Prevention 

• Sickle cell disease information, articles, and data 
• Información sobre enfermedades de células falciformes, artículos, y datos (Español)

National Heart, Lung, and Blood Institute 

• Sickle cell disease information
• La enfermedad de células falciformes (Español)
• Sickle cell disease information for health professionals

Sickle Options - website developed based on input from persons living with sickle cell disease and their caregivers

Sickle Options - sitio web desarrollado con aportaciones de personas que viven con la enfermedad de células falciformes y sus cuidadores (Español)

Publications

• Things To Know About Sickle Cell Disease (PDF, English/Español) 
• Things To Know About Sickle Cell Trait  (PDF, English/Español)
• Sickle Cell Disease in Children and Adolescents: Diagnosis, Guidelines for Comprehensive Care, and Protocols for Management of Acute and Chronic Complications (PDF)
• Sickle Cell Disease: A Resource for Educators

Sickle Cell Management

Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014 – Guidelines to help people living with sickle cell disease receive appropriate care by providing the best science-based recommendations to guide practice decisions. This publication was released by the National Institutes of Health.

The Sickle Cell Disease Treatment Demonstration Program was funded by the United States Congress in 2004 to improve the care of people with sickle cell disease. The 2017 congressional report details the many activities, outcomes, lessons learned and recommendations stemming from this work. 

Organizations

 Transitioning to Adult Care

• Taking Charge of Your Health and Health Care provides information about transitioning care with SCD, tips to prepare for it, and resources to help manage transition.
• 9 Tips to Living Well with SCD in College (PDF) is a two-page document for college students about staying healthy.
• Sickle Cell Disease Transition Readiness Assessment Template (Doc) is a one-page form that helps a person learn what they know about their health.
• Sickle Cell Disease Clinical Summary (PDF) is a form that can be completed with detailed medical-related information.
• For providers, A Biopsychosocial Model aims to close the knowledge gap between primary care providers and specialists who treat transitioning individuals with sickle cell disease. 
• Mikeia Green's Story is about her experience with managing sickle cell disease in college. 

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External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services. These sites may also not be accessible to persons with disabilities.