Frequently Asked Questions

Developing a Global Database of Persons Living with the Sickle Cell Disorder and the Sickle Cell Trait.

What is sickle cell disease?

Sickle cell disease is an inherited disorder that affects red blood cells. People with sickle cell disease have red blood cells that become hard and pointed instead of soft and round. Sickle cells cause anemia, pain and many other problems.

What is sickle cell trait?

If you have sickle cell trait, you have inherited the gene for sickle cell disease. Sickle cell trait does not turn into sickle cell disease. If someone has sickle cell trait and his partner has sickle cell trait they may produce a child with sickle cell disease. There are about 2.5 million people in America with sickle cell trait.

If sickle cell trait is not an illness, why are people tested?

People are tested for sickle cell trait so they understand if they might be at risk of having a baby with sickle cell disease.

What medical problems are caused by sickle cell disease?

The blockage of blood flow caused by sickled cells leads to many complications including chronic pain, infection, lung tissue damage, blindness, kidney disease and stroke.

How many people have sickle cell disease?

Sickle cell disease is a global health problem. In the United States it is estimated that over 100,000 people have sickle cell disease. About 24,000 babies are born with the disease each year in America, Approximately 365,000 babies are born with SCD in Africa every year, whereas about 3% of the total Asian population are affected by sickle cell disease.

Sickle cell disease is an inherited disorder that affects red blood cells. People with sickle cell disease have red blood cells that become hard and pointed instead of soft and round.

How long does a person with sickle cell disease live?

The average life expectancy in America has improved since all children are now screened for it. Life expectancy has now increased to the mid 40 years of age range.

Are people of African descent the only group affected?

No. It is really important to recognize sickle cell disease is not just a disease of black people. Latinos have the second most common incidence in the US. Importantly, sickle cell disease is present globally including in those of the following ancestries: Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease also appears in Middle Eastern countries and in Asia. The country with the third highest prevalence in the world is India.

Is there a cure?

There is no universal cure for sickle cell disease. Those who are eligible to receive a bone marrow transplant do have a chance at a cure. Research in gene therapy is currently underway.

People are tested for sickle cell trait so they understand if they might be at risk of having a baby with sickle cell disease.

What are some promising treatment developments?

There are dozens of new treatments currently under investigation. In 2017, the first new treatment for SCD was approved by the FDA (USA). Endari reduces the frequency of pain episodes and can be given to individuals age 5 and older who either do or don’t already take hydroxyurea.

Can people with sickle cell disease live a productive life?

Yes. But like all patients with chronic disease, sickle cell patients are best managed in a comprehensive multi-disciplinary program of care and a strong extended support system.

Meet Olatunji Wamiri - Super Warrior

I have ventured into Wamiri SCF to advocate for people living with sickle, create more awareness and to help as many as we can whenever we are capable of.

Published by Olatunji Wamiri - 5/7/2020

Losing Omotoye Ajiboye in JSS 1 to Sickle Cell

Losing Omotoye Ajiboye in JSS 1 to Sickle Cell Disorder many years ago was devastating as a child. We attended same Primary and Secondary Schools.

Published by Oluwadaisi D. T. Olaseinde - 5/7/2020

Self-Advocacy in Sickle Cell Care

Today June 19th, we commemorate the World Sickle Cell Day across the globe as we Shine the Light on Sickle Cell Disease

Published by Sharifu K Tusuubira - 19/6/2020

Stroke in Children with Sickle Cell Disease at Age 5

Strokes are an occurrence one expects to see in older people, but in children with sickle cell disease (SCD), they occur most commonly at age 5.

Published by Stroke Center - 8/6/2020

Acute chest syndrome in children with sickle cell disease

Caused by infections and/or a blockage of blood flow to the chest and lungs, acute chest syndrome (ACS) is a complication in sickle cell patients that can...

Published by GISA News Anchor - 8/6/2020

Home care for children with sickle cell disease

Being in and out of hospital is one of the worst experiences parents of children with sickle cell suffer. However, parents should never tire from being in ho...

Published by Beatrice Nakibuuka - 8/6/2020

Leiya's Story

Sickle Cell Disease: Leiya's Story

Published by UCSF - 8/6/2020

Stem Cell Transplant

Stem Cell transplant for adult achieves treatment milestone in Canada

Published by Greg Harris - 8/6/2020

‘Adulting’ with sickle cell anemia

Transition clinics help young patients aging out of pediatric care

Published by Sandra Jordan - 8/6/2020

Sickle Cell Health Insurance

Experts advocate public health insurance for sickle cell patients