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


28th August 2021
ASH RC Sickle Cell Disease Clinical Trials Network Launches First Ten Research Sites

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 …

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26th August 2021
Get Ready for Back to School with CHOP’s Sickle Cell School Outreach Resources

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 …

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12th August 2021
CONSA Update: “Newborn screening for sickle cell disease in Africa” Article

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 …

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9th August 2021
Advocates Lobby US Congress During Virtual Rare Disease Week

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 …

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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


Dr. John Akabutu

Chair

Dr. Jean Walrond PhD

President & Chief Operations - Research & Education

Dr. Robert Turner

Brand Ambassador

Hannah Eche-Ameh

Secretary

Glenn Stewart

Treasurer

Felix Ikokwu

Admin Assistant

Michelle Paterson Nipp

Past President

Abisola Ojikutu

Director

Dr. Carlyle Ross

Director--Auditor

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