SCFA - Sickle Cell Foundation of Alberta

 

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.

What is Sickle Cell Disease?

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

 

Childhood-Onset

Children are born with Sickle Cell Disease, but they may not show symptoms until after their fetal hemoglobin is depleted... read more

 

Common Around the World

Sickle Cell Disease affects millions of people from around the world, especially those whose ancestors descended from... read more

News/Events


25th March 2021
Advancing Treatments and Cures for Sickle Cell Disease

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 …

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17th March 2021
CDC’s Sickle Cell Data Collection Program Expands to Nine States

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 …

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3rd March 2021
MARAC Statement: Temporary Suspension of Clinical Trials

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. …

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8th February 2021
A systematic review of quality of life in sickle cell disease and thalassemia after stem cell transplant or gene therapy

Abstract Patients with sickle cell disease (SCD) and thalassemia experience several complications across their lifespan that lead to impairment in different health-related quality of life (HRQOL) domains. There is increasing interest in curative therapies for patients with SCD and thalassemia, including hematopoietic stem cell transplant (HSCT) and gene therapy; however, the effect of these therapies …

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Frequently Asked Questions


 

01

What are sickle cells?

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.

 
 
02

How do you get Sickle Cell Disease?

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.

03

Is Sickle Cell Disease a rare blood disorder?

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.

 
 
04

How come people with Sickle Cell Disease get ill often?

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.

05

How will I know if I have Sickle Cell Disease?

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.

 
 
06

What is sickle cell trait?

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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Our Directors


Felix Ikokwu

Admin Assistant

Michelle Paterson Nipp

Past President

Dr. Kimberly Burke

Director

Abisola Ojikutu

Director

Bernice Asiedu-Ampen

Vice President - Administration & Northern Alberta

Dr. Carlyle Ross

Director--Auditor

Dr. Jean Walrond PhD

President - Research & Education

Hannah Eche-Ameh

Director

Founded in 2001 by Dr Ekua Yorke and Dr Jojo Yorke. Sickle Cell Disease is one of the most common childhood-onset, single-gene disorder. Check out these stats on the right.

1/365
SCD occurs among about 1 out of every 365 Black or African-American births.

1/16,300
SCD occurs among about 1 out of every 16,300 Hispanic-American births.

1/13
About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).

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for a Sickle
Cell Patient


While there is no cure yet for Sickle Cell Disease, the painful symptoms of this disease can be prevented by regular blood transfusions.

Donate now