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Category: Patients & Families

The National Newborn Screening & Global Resource Center

The National Newborn Screening and Global Resource Center (NNSGRC) serves as an independent U.S. national resource center for newborn screening and provides newborn screening information globally. It serves as the only non-federally funded comprehensive source of newborn screening information.

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Sickle Cell Anemia Information Portal from the Mayo Clinic

Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body.

Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.

Read more at the Mayo Clinic

Sickle Cell Anemia Information Portal on MedlinePlus

Sickle cell anemia is a disease in which your body produces abnormally shaped red blood cells. The cells are shaped like a crescent or sickle. They don’t last as long as normal, round red blood cells. This leads to anemia. The sickle cells also get stuck in blood vessels, blocking blood flow. This can cause pain and organ damage.

Read more at MedlinePlus

About the Americans with Disabilities Act

Too often in the past, people with sickle cell disease were denied jobs or fair treatment at work solely because they had sickle cell disease. Now, the Americans With Disabilities Act of 1990 puts the strong arm of the law on the side of fairness. It protects many people with sickle cell disease from job […]

Sickle Cell Natural Healing: A Mother’s Journey

Author: Tamika Moseley

After spending every three months of her newborn’s life in the hospital managing his sickle cell disease, Tamika Moseley knew she had to change what she was doing or the hospital would be her second home. In this deeply personal book, Tamika shares her story of the difficult journey she took to find natural ways to treat her son’s debilitating disease.

My Brother Has Sickle Cell

Author: Erica Gamble

From mom, professor, author and life coach Dr. Erica Gamble – a heartwarming story about a boy who happens to have sickle cell, based on her son, who has the disease.

What is Sickle Cell Disease and Trait?

Sickle Cell disease is a group of inherited red blood cell disorders. It is the most common genetic disease in the US. About 100,000 Americans have sickle cell disease.

This article includes a link to a handout for printing and distribution.

About Sickle Cell Disease

A list of frequently asked questions concerning basic information about sickle cell disease.  Includes a printable fact sheet.

Stepping Up to Adult Care

This guide will assist programs in developing and establishing a transition program from pediatric to adult care for youth with chronic medical conditions.

I Only Cry At Night

Author: P. Allen Jones

This is a personal story about overcoming many obstacles including sickle cell disease. P. Allen struggled out of poverty to a federal executive career despite living in pain. This book is an inspiration to anyone, especially those suffering with sickle cell disease.

Hope & Destiny Jr.: The Adolescent’s Guide to Sickle Cell Disease

Authors: Lewis L. Hsu M.D., Ph.D., Carmen C. M. Rodrigues RN, Silvia R. Brandalise M.D., Angela Vennemann, and Tifani Carter

Currently in its 3rd edition, Hope & Destiny offers the latest information on scientific research, preventing complications and treatment for sickle cell disease in an easy-to-read adult format.

Hope and Destiny

Authors:Alan Sacerdote M.D., Allen Platt, Allan F. Platt Jr. P.A.-C. M.M.Sc., M D Sacerdote

An up-to-date, informative, and personal discussion of sickle-cell anemia, this guide provides information on medically proven methods of treatment along with patient vignettes. Written primarily for African Americans, who comprise the majority of the victims of sickle-cell anemia, this handbook examines the complex issues that surround this genetic disease.

Template for Patient & Family Needs Assessment

This form is designed to help facilitate understanding of the family’s circumstances, knowledge of sickle cell disease, and satisfaction with health care and to identify patient and family concerns and potential barriers to appropriate treatment. It should be completed by the family when the child is not ill (e.g. in the waiting room prior to a clinic visit) and subsequently reviewed with the family by a health care provider.