Sickle Cell Resources
Sickle Cell: About · Types & Complications ·Trait En Español
Photoblogs
- Heart of Texas: Andre’s Story – Andre, a graduate student, shares his story as a patient advocate living with sickle cell disease.
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.
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
Educational Information
American Society of Hematology
Centers for Disease Control and Prevention
National Heart, Lung, and Blood Institute
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.
Community-Based and Direct Service Organizations
| Name | City | Phone | |
|---|---|---|---|
| As One Foundation | Katy | 832-308-9984 | info@asonefoundation.org |
| Carol’s Promise Sickle Cell Foundation | Arlington | 469-509-8149 | |
| Chris Johnson Foundation | Sugar Land | 832-721-8998 | info@chrisjohnsonfoundation.org |
| Maroon 9 | Fort Worth | 682-200-9261 | info@maroon9.org |
| Melanie Dartest Chapter Sickle Cell Foundation | Houston | 281-858-1280 | melaniedartest@att.net |
| Sickle Cell Association of Houston | Houston | 832-252-9293 | care@sicklecellhouston.org |
| Sickle Cell Association of Texas Marc Thomas Foundation |
Austin (Headquarters) Houston San Antonio |
1-844-944-4673 (toll free) 512-458-9767 (Austin) 713-534-1712 (Houston) 210-899-3928 (San Antonio) |
info@sicklecelltx.org |
| Supporting Our Sicklers (S.O.S.) Parent & Guardian Support Group | Houston and surrounding areas | sosmbrshp@gmail.com |
| Name | City | Phone | |
|---|---|---|---|
| Starlight Children’s Foundation | Culver City, California | 310-479-1212 | info@starlight.org |
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.