Living Well With Sickle Cell®

How You? Can Help

No matter where you are, you can be involved with the effort to help find a cure for sickle cell disease.

DONATE

Giving financially helps support our families to help them through challenges caused by SCD.

VOLUNTEER

Giving financially helps support our families to help them through challenges caused by SCD.

FUNDRAISE

Giving financially helps support our families to help them through challenges caused by SCD.

DONATE BLOOD

You can donate or organize a blood drive at your local church, school, business, or community center.

What is Sickle Cell?

Sickle cell disease is a group of inherited red blood cell disorders. Normal red blood cells are round like doughnuts, with the holes filled in, they are soft and slippery so they move through small blood vessels easily in the body to deliver oxygen. Sickled red blood cells don’t move through the body as easily because they become hard and sticky. When the sickled cells go through the small blood vessels, they clog the blood flow and may break apart. This can cause pain, tissue damage and a low blood count, or anemia.Sickle cell disease is a group of inherited red blood cell disorders. Normal red blood cells are round, soft, and flexible, enabling them to move easily through small blood vessels to deliver oxygen. In contrast, sickled red blood cells are hard and sticky, hindering their movement and causing them to clog blood flow and break apart. This results in pain, tissue damage, and anemia (low blood count)

Learn about SICKLE OPTIONS

Over the last two decades there have been more treatments available for persons living with SCD. There is an online decision aid availalble to help you learn about sickle cell disease, the available treatments and get help making the decision that is right for you and your family.Over the past two decades, significant advancements have been made in the treatment of Sickle Cell Disease (SCD). These advancements have resulted in a wider array of treatment options for individuals living with SCD, offering renewed hope and improved quality of life. To assist patients and their families in navigating these choices, an online decision aid has been developed. This valuable resource provides comprehensive information about sickle cell disease, including its symptoms, complications, and available treatment options. By presenting this information in an easily understandable format, the decision aid empowers individuals to make informed decisions about their care, in collaboration with their healthcare providers. The decision aid considers individual needs and preferences, ensuring that the chosen treatment plan aligns with the patient’s unique circumstances and goals.

New Parent Handbook

This is a must have for new and not-so-new parents.

The Living Well with Sickle Cell®, The Parent Handbook is a resource for parents and caregivers.

Written in a friendly, understandable method and using color-coded tabs for easy navigation, the comprehensive Parent Handbook contains critical information and resources for parents coping with this painful disease, including:

SCD: What to know and what to do

About your baby

People who care for your child

When to call the doctor and when to go to the ER

Information for teachers and childcare providers

Frequently asked questions about SCD

Record keeping & resources

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We are helping families.

You are not alone. We’re here with programs and services to help you when you need it.

RECENT NEWS & EVENTS

Understanding Sickle Cell Trait and Disease

A video from the Sickle Cell Program at Children’s Hospital of Pittsburgh of UPMC explaining the difference between sickle cell trait and disease.

Children’s Sickle Cell Foundation of Greater Pittsburgh

In 2002, a mother of a child with sickle cell disease became exhausted in her search for support programs for her son and her family. She identified a gap in services for children with sickle cell disease from birth to adulthood in Pittsburgh. Frustrated and feeling alone, she reached out to a few other parents, […]

Bridging the Blood

Being a donor would change the lives of people with sickle cell disease, children in particular, so that when they need the blood that it’s there. If you want some information you know just call the Central Blood Bank. They’ll be more than glad to give you information on blood donation. “Blood donation should just […]