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
The ASH Research Collaborative (ASH RC) has announced the first 10 clinical research consortia to join the ASH RC Sickle Cell Disease Clinical Trials Network. The sites will be able to enroll children and adults living with SCD within their patient populations in clinical trials as part of an unprecedented national effort to streamline operations …
As the 2021-2022 school year begins, it is important that students living with sickle cell disease (SCD) start the year prepared. To help, the Sickle Cell Center at Children’s Hospital of Philadelphia (CHOP) has developed a collection of comprehensive resources on SCD and how it can affect students throughout their academic career. These resources are …
The Consortium of Newborn Screening in Africa (CONSA), launched in 2016 to address the global burden of SCD, shows the value of newborn screening and how it can be implemented in diverse settings throughout sub-Saharan Africa. This American Society of Hematology (ASH) supported consortium aims to introduce standard-of-care practices for screening and early-intervention therapies at participating …
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to learn about federal legislative issues, meet other …
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).