A common disease that’s rarely talked about.
Sickle Cell Disease (SCD) is a genetic blood disorder that affects millions of people around the world. Despite its prevalence, people born with SCD tend to suffer in silence. Cultural barriers and misinformation about SCD have contributed to its bad reputation. SCD is definitely not contagious. Nevertheless, many people mistakenly believe SCD is easily transmitted like other blood-borne illnesses such as Hepatitis C and HIV.
This disease affects all people differently and the severity of symptoms varies from person to person. SCD can be managed with medical treatment. Early diagnosis, regular medical care by a qualified doctor, and awareness of pain triggers all contribute to improved quality of life for patients living with SCD.
The Sickle Cell Foundation of Alberta (SCFA) is dedicated to creating awareness about SCD, advocating for funding for SCD research and providing support services to patients living in Alberta, their parents and caregivers.
Sickle Cell Disease is a genetic blood disorder. It is inherited when offspring receive the sickle cell trait from both their biological parents... read more
Children are born with Sickle Cell Disease, but they may not show symptoms until after their fetal hemoglobin is depleted... read more
Sickle Cell Disease affects millions of people from around the world, especially those whose ancestors descended from... read more
This study aims to assess wellbeing (i.e., pain, anxiety, distress) in children and young adults who have, and have not, undergone a transplant. We are recruiting individuals with SCD ages 8-25, and their parent/caregiver from across Canada to partake. This study has been designed to be completed online to ensure convenience and ease for all …
The NHLBI launched the Cure Sickle Cell Initiative in 2018 to support the development of gene-based cures for sickle cell disease (SCD) that will work for all patients, including those ineligible for bone marrow transplants. Researchers involved in the Cure Sickle Cell Initiative helped develop an accurate, affordable, and easy-to-use device for point-of-care diagnosis of SCD in …
The Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program gathers health information from multiple sources to determine how many people live with the disease and monitor changes related to their health over time. In 2020, CDC funded the expansion of the program from two to nine states to collect essential data …
March 1, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the announcement on February 16, regarding the temporary suspension of bluebird bio clinical trials of LentiGlobin Gene Therapy for Sickle Cell Disease and the pause of all commercial use of bluebird bio European gene therapy. …
Most red blood cells are round in shape - like a disc - so they can easily flex through blood vessels of all sizes. Sickle cells are not like normal red blood cells. They have abnormal hemoglobin which causes red blood cells to become misshapen, hard and sticky. These C-shaped cells get their name from a farm tool called the “sickle”, which is a similar shape.
You inherit the disorder from your biological parents. The disease is only passed on genetically when offspring receive the sickle cell trait from both biological parents. It is present for life.
It is the most common genetic blood disorder world-wide. Despite this, many people – including doctors, nurses, and school teachers – aren’t familiar with this disease.
Sickle cells die quicker than healthy, red blood cells. For this reason, red blood cells in someone living with SCD are in constant short supply. A sickle cell patient will tire more easily, become dehydrated more quickly, and is prone to frequent pain crises and serious infection.
A simple blood test called the hemoglobin electrophoresis can be done by your doctor. This test will tell if you are a carrier of the sickle cell trait, or if you have the disease. New born babies can also be screened for sickle cell disease.
A person with sickle cell trait carries one sickle hemoglobin producing gene and one normal hemoglobin gene. Normal hemoglobin is called type ‘A’ and sickle hemoglobin is called type ‘S’. Sickle cell trait is the presence of hemoglobin ‘AS’ on the hemoglobin electrophoresis. This will NOT cause sickle cell disease.
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SCD occurs among about 1 out of every 365 Black or African-American births.
SCD occurs among about 1 out of every 16,300 Hispanic-American births.
About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).