This year’s Federated Health Charities campaign runs from April 3, 2023, to June 30, 2023. During the campaign, we are highlighting how each of our 21 charities works to improve the health and well-being of people across our province.
The 20th charity in our spotlight is the Sickle Cell Awareness Group of Ontario. The Sickle Cell Awareness Group of Ontario is the newest member of Federated Health Charities, joining the organization in 2020.
Sickle cell disease is a group of inherited red blood cell disorders that affect the hemoglobin, a protein that carries oxygen, in the red blood cells. Healthy red blood cells are round, and they can squish to move through small blood vessels to carry oxygen to all parts of the body. In a person with sickle cell disease, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and gives them a curved, sickle-like appearance. The sickle cells die early, which causes a constant shortage of red blood cells throughout the body. Also, when they travel through small blood vessels, they get stuck and clog the blood flow.
For people who are born with sickle cell disease, symptoms normally start to appear when they are about five months old. The symptoms and complications of sickle cell disease can range from mild to severe, and they are different for each person. Some of the common complications of sickle cell disease include anemia, acute chest syndrome – a life-threatening complication of sickle cell disease that can result in lung injury, breathing difficulty, and low oxygen to the rest of the body – blood clots, kidney problems, liver problems, organ damage, frequent infections, vision loss and stroke.
There is no cure for sickle cell disease, but it is possible for people and families affected by sickle cell disease and their healthcare providers to manage the disease. There are treatments available that can prevent complications and lengthen the lives of people with sickle cell disease. However, because sickle cell disease is a condition that most commonly affects Black people, research into finding a cure and better treatments to improve both the lifespan and quality of life for people with sickle cell disease has historically received less funding than other, less common conditions.
Sickle cell disease is the most common inherited disease in Canada and one of the most common inherited diseases in the world. Sickle cell disease mostly affects people whose ancestors came from sub-Saharan Africa, South America, the Caribbean, Central America, Saudi Arabia, India, and the Mediterranean. However, sickle cell disease is an inherited condition, which means that anyone who inherits two copies of the gene that causes sickle cell disease – one from each parent – will be born with sickle cell disease.
People who inherit just one gene do not develop sickle cell disease. Instead, they are to “carry” the sickle cell trait. A person with the sickle cell trait has an increased chance of having a child with sickle cell disease if they have a child with another person also who carries the sickle cell gene.
About 3,500 people in Ontario have sickle cell disease but it’s estimated that more than 150,000 Ontarians carry the sickle cell trait. Although Ontario now offers universal newborn screening for sickle cell disease, critical gaps remain in our understanding and knowledge about the exact prevalence of sickle cell disease in our province.
You have to prepare yourself to have a bad day.
MaryAnn Gordon’s daughter was seven months old when she was diagnosed with sickle cell disease. By the time her daughter was eight years old, she had undergone a splenectomy, numerous blood transfusions and hospital admissions to treat her for severe bone pain, and a silent stroke.
“Most days I am on edge, preparing for a phone call from her school secretary telling me that she is having a crisis and that I need to come get her, or that they had to administer pain medication to her. This happens on average three to four times per week,” MaryAnn says. “The reality of this can be overwhelming and isolating, especially as a single mother.”
The Sickle Cell Awareness Group of Ontario (SCAGO) is dedicated to supporting and advocating on behalf of people and families affected by sickle disease. Their vision is to build an Ontario where everyone with sickle cell disease has equal and equitable access to comprehensive healthcare, regardless of where they live in the province.
SCAGO’s advocacy efforts include lobbying the Ontario Drug Program to add coverage for life-saving drugs for the treatment of iron overload for all people with sickle cell disease regardless of their financial status; and working for the recognition of June 19th as Sickle Cell Disease Awareness Day in Ontario to increase awareness of sickle cell disease.
For MaryAnn, the support SCAGO provides to families and caregivers of people with sickle cell disease was critical.
“I immediately bonded with other parents who are going through the same things I am. SCAGO provides a safe, non-judgmental environment for [sickle cell disease] patients and their caregivers. This shared experience gives parents like me the emotional strength to continue to provide the best possible care for our children who suffer from this debilitating disease.”
The Sickle Cell Awareness Group of Ontario (SCAGO) is the newest member of Federated Health Charities, joining our organization in 2020. SCAGO was founded in 2005 by the founders of All Naturals Cosmetics Inc, Lanre and Timothy Tunji-Ajayi, as a way to support the marginalized in the communities where they do business.
“As a small organization, the Sickle Cell Awareness Group of Ontario is currently 100% volunteer-run. While that is good in principle, volunteers also have day jobs. And so it makes it very difficult for us to do many of the programs that are essential to supporting the families with sickle cell disease,” says Lanre Tunji-Ajayi, SCAGO President and CEO.
“By being part of the Federated Health Charities and receiving donations we’ll be able to hire, even if it’s one or two staff members, to support our programs. We will be able to also put in place additional programs to support these families that do need us,” Lanre says. ” So, we’re very happy that sickle cell disease is getting donations through the Federated Health Charities to ensure that we continue to move forward in our mission. And our mission is simply to improve the lives of individuals living with sickle cell disease.”
To learn more about the Sickle Cell Awareness Group of Ontario, please visit the Sickle Cell Awareness Group of Ontario – SCAGO (sicklecellanemia.ca).
To make a payroll pledge or donation to support the Sickle Cell Awareness Group of Ontario and Federated Health Charities, please visit Federated Health Charities.
