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.
- The Common Good: Above The Crisis features people sharing how chronic illness can bring mental health challenges.
- 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
Educational Information
American Society of Hematology
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 Disorders and COVID-19: Why My Child Needs a COVID-19 Vaccine
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
Name | City | Phone | |
---|---|---|---|
Sickle Cell Association of Texas Marc Thomas Foundation |
Austin | 512-458-9767 or 877-994-4673 (toll free) |
info@sicklecelltx.org |
Houston | 713-481-1295 | info@sicklecelltx.org | |
San Antonio | 210-899-3928 | info@sicklecelltx.org | |
Maroon 9 | Fort Worth | 817-797-2526 | info@maroon9sicklecell.org |
Sickle Cell Association of Houston | Houston | 832-930-7224 | care@sicklecellhouston.org |
Name | City | Phone | |
---|---|---|---|
Sickle Cell Association of Texas Marc Thomas Foundation |
Austin | 512-458-9767 or 877-994-4673 (toll free) |
info@sicklecelltx.org |
Houston | 713-481-1295 | info@sicklecelltx.org | |
San Antonio | 210-899-3928 | info@sicklecelltx.org | |
Maroon 9 | Fort Worth | 817-797-2526 | info@maroon9sicklecell.org |
Sickle Cell Association of Houston | Houston | 832-930-7224 | care@sicklecellhouston.org |
Name | City | Phone | |
---|---|---|---|
Sickle Cell Disease Association of North Texas |
Fort Worth | 817-882-0990 | Use form on Contact Us page. |
As One Foundation | Katy | 832-308-9984 | info@asonefoundation.org |
Chris Johnson Foundation | Sugar Land | 832-721-8998 | info@chrisjohnsonfoundation.org |
SOS Parent Support Group | Pearland | 832-409-7671 | Use form on Contact Us page. |
Starlight Children’s Foundation | Los Angeles, CA | 310-479-1212 | Use form on Contact page. |
Sickle Cell Disease Association of America |
Baltimore, MD | 800-421-8453 | admin@sicklecelldisease.org |
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.
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.