The Sickle Cell Awareness Group of Ontario works to improve the lives of people and families living with sickle cell disease and ensure that they have equal and equitable access to comprehensive, standard care regardless of where they are in Ontario.

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 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, making red blood cells hard so that they get stuck in smaller blood vessels, clogging blood flow, and giving them a curved, sickle-like appearance. The sickle-shaped cells die early, which causes a constant shortage of red blood cells throughout the body.

For people with sickle cell disease, symptoms start to appear when they are about five months old. Symptoms can range from mild to severe, and they are different for each person. Common complications of sickle cell disease include anemia, acute chest syndrome—a life-threatening condition—blood clots, kidney and liver problems, organ damage, frequent infections, vision loss, and even stroke.

Sickle cell disease is the most common inherited disease in Canada and one of the most common inherited diseases in the world. While there is no cure, there are treatments available that can prevent complications and lengthen the lives of people with sickle cell disease. However, because sickle cell disease most commonly affects Black people, research into finding a cure and more effective treatments has historically received less funding than other, less common conditions.

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, 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 “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 she was eight years old, she had undergone a splenectomy, numerous blood transfusions and hospital admissions for severe bone pain, and experienced 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,” says MaryAnn. “The reality of this can be overwhelming and isolating, especially as a single mother.”

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.”

Federated Health Charities has been a supporter of the Sickle Cell Awareness Group of Ontario (SCAGO) since 2020.

“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.”

Learn more about Sickle Cell Awareness Group of Ontario at Sickle Cell Awareness Group of Ontario (sicklecellanemia.ca).

Donate to Federated Health Charities today to support a healthier Ontario and a better life for people and families living with sickle cell disease.