According to a story from MSN, Busola Omiyale’s daughter Toriayooluwa was only nine months old when she could tell that something wasn’t right. The girl had sickle cell disease, a rare illness that disproportionately impacts people of African heritage. Now 16 years old, Busola was alarmed when her first bout of symptoms appeared, causing Toriayooluwa, or just Tori for short, to become floppy and unresponsive.
About Sickle Cell Disease
Sickle cell disease is a genetic, inherited disorder of the blood. This disorder is characterized by an abnormality affecting hemoglobin, which is found in red blood cells and is responsible for carrying oxygen. The abnormality causes blood cells to lose their typical circular shape and instead take on an elongated, sickle-like appearance. This is caused by a genetic mutation that may have arisen as a defense against malaria, although this benefit only occurs in people with sickle cell traits, not the disease. Symptoms begin to appear at around six months old and include swelling of the hands and feet, stroke, bacterial infections, and acute episodes of severe pain termed sickle cell crisis. Severity of disease varies, but these attacks can result in serious declines in health and organ damage. Treatment is mostly symptomatic, but bone marrow transplant has been curative in children. The disease most frequently affects people of African ancestry. Life expectancy is between 40 and 60. To learn more about sickle cell disease, click here.
Tori’s Sickle Cell Story
At age ten, doctors detected what they dubbed a ‘silent infarct’ in her brain, which drastically increases her risk of having a stroke. From then on, she was given blood transfusions once a month. Blood exchanges and transfusions can be a critical method of intervention for people living with sickle cell disease, and Tori’s life depends on them:
“I am so grateful to the selfless people who give their blood and their time to help Tori and other children and adults with sickle cell to try and lead a normal life – I just wish more people would do the same.” – Busola
Cynthia Tewogbade is the Events and Outreach Ambassador for NHS Blood and Transplant and is working hard to get more people of African heritage to donate blood. She says that donations from this group have increased by 29 percent, but demand has increased by 50 percent.
September is National Sickle Cell Awareness Month, so now is the time to help spread more awareness about this devastating and painful illness.
Learn more by getting connected with Dreamsickle Kids, a patient advocacy group for this disease.
Check out the latest stories from Patient Worthy about sickle cell disease here.