Sickle Cell Resources

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

Videos

Living with and managing sickle cell disease:

• Managing Sickle Cell Disease as a Teenager Nicholas, a teenager, and his mother talk about life with sickle cell disease (SCD). 
• Living with and Managing Sickle Cell Disease – Tiffany, a 26-year-old, shares how she copes with SCD.
• The Mental Health Journey with Sickle Cell Disease A patient with SCD and his mother chat about their mental health and resources that helped them. 
• Sickle Cell Options Video Library – A video series on SCD-related topics.

Transitioning Stories

• Stepping Up: Kevin’s Decision (Part 1) – A young man gives an account of his decision to take his medicine.
• Stepping Up: Calvanay’s Advice (Part 2) – A young woman promotes self-advocacy when looking for an adult health care provider.

Sickle Cell Specialists in Texas 

• Clinical Care Coordination Consultants – Click on the “Pediatric Hematology Consultants" link.

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

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 Care

Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014 – National Institutes of Health (NIH) guidelines for providers to help people living with SCD get appropriate care.

Sickle Cell Disease Treatment Demonstration Program – National grant-funded program to improve the care of people with sickle cell disease.

Sickle Cell Disease Treatment Demonstration Program 2017 Congressional Report – A summary of the program activities, results, and take aways.

Sickle Options – Web guide to sickle cell disease and treatments

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

Community-Based and Direct Service Organizations 

 Transition to Adult Care

• Taking Charge of Your Health and Health Care – Information to help patients with SCD learn more about the transition to adult care.
• 9 Tips to Living Well with SCD in College (PDF) – Two-page document for college students about staying healthy.
• Sickle Cell Disease Transition Readiness Assessment Template (Doc) – One-page form that helps a person learn what they know about their health.
• Sickle Cell Disease Clinical Summary (PDF) – A form that can be completed with detailed medical-related information.
• A Biopsychosocial Model – A model for providers to use when patients transition to adult care.
• Mikeia Green's Story – The experience of a young woman managing SCD while in college.

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