Search

Information for Patients and Families

Welcome to the Sickle Cell Information Center 

This website is designed to provide a clear and accessible overview of sickle cell disease (SCD) for individuals living with SCD, their families, and anyone looking to better understand the condition. This site is for general educational purposes only. It cannot replace medical advice. Always consult your sickle cell care team for questions about your specific health needs. Throughout the site, you’ll find a mix of original content and links to trusted external resources. Linked content will take you off this site, while original materials are hosted here for your convenience. Whether you’re new to sickle cell or looking for more in-depth knowledge, SC info can guide you towards trustworthy resources.  

Overview of Sickle Cell Disease

Sickle cell disease (SCD) is a blood disorder where the body produces abnormally shaped red blood cells (RBCs).
Learn More

Recognizing Emergencies

Patients and families should watch for serious symptoms of sickle cell disease. These are emergencies and need treatment right away.
Learn More

Family and Medical Leave (FMLA)

The Family and Medical Leave Act (FMLA) protects the jobs of people with serious medical conditions that make them unable to work as well as their families.
Learn More

ADA Accommodations for Employees with SCD

People with SCD are protected by the Americans with Disabilities Act, and employers must provide reasonable accommodations.
Learn More

Complications of SCD

There are a variety of complications of sickle cell disease and some require immediate medical attention.
Learn More

Newborn Screening Results

In the U.S., every state performs a newborn screening test, which includes blood tests for SCD and sickle cell trait.
Learn More

Qualifying for Social Security Disability with SCD

People with SCD can get financial assistance through the Social Security Administration (SSA).
Learn More

IEP & 504 Plans for Students with SCD

Health challenges related to sickle cell disease may impact school performance, and it's important to have plans in place to help.
Learn More

Medications and Treatments

Routine medical and other disease-modifying and transformative therapies that can help people with SCD stay healthy.
Learn More

Teen Transition

Healthcare transition is the process of preparing teens and young adults to move from pediatric to adult health care.
Learn More

Medicaid Care for Families with SCD

Medicaid and the Children’s Health Insurance Program (CHIP) provide free or low-cost health coverage for people in special circumstances.
Learn More

Connect with community organizations

Connect with national and local organizations for more SCD resources.
Learn More

Indicators of an Emergency Situation

Patients and families should watch for the following conditions that need an urgent medical evaluation:
• Fever of 101° F or higher
• Chest pain
• Shortness of breath
• Increasing tiredness
• Abdominal swelling
• Unusual headache
• Any sudden weakness or loss of feeling
• Pain that will not go away with home treatment
• Priapism (painful erection that will not go down)
• Sudden vision change

Learn more about sickle cell disease

Resources from:

Arise Initiative

ASH

CDC

NIH

SCDAA