On the outside, Bola Jibodu may look like everything is just fine. But what you don't see are the complications of sickle cell disease and her drive to keep going.
Her story is featured in the new Connecting the Dots series, produced by BBC STORYWORKS, the commercial content division of BBC STORYWORKS Global News and presented by MedTech Europe, a trade group.
The series examines the impact of medical technologies on the lives of patients and their families.Terumo Blood and Cell Technologies has two films in the series. The second feature looks at a teenage boy who received lab-grown skin to treat his severe burns.
"Where has this been?" asks Bola, referring to the automated red blood cell exchange that she receives to help manage sickle cell disease. Like many patients, she had used other treatments, such as blood transfusions and painkillers, but they did little to improve her quality of life. "It's really important to know that life can be better with treatment."
During automated red blood cell exchange (RBCX), a patient's blood is first separated into its components — platelets, plasma and red blood cells — by a device such as the Spectra Optia® Apheresis System5. The patient's sickled red blood cells are then removed from the blood, discarded and replaced by healthy donor red blood cells. A doctor determines the frequency of treatment, which takes about two hours, and many patients say it gives them a sense of predictability and normalcy as they manage a chronic condition.
"I suffer from this disease, but it doesn't define me," Bola says. She shared her Connecting The Dots debut with family and friends. Those close to her are grateful for the treatment's impact on her life. But others, like an uncle, were shocked. Bola recalls: "He said, 'Bola, I was crying. I'm sorry. I didn't know what you go through."
She remains deeply committed to sharing her experience with red blood cell exchange because it has been a game changer for her quality of life in managing pain crisis and helping her just live fully and normally. Bola says being part of the filming was a lot of fun. She got a kick out of the filming crew saying, "Action" and telling her to walk more slowly to capture the right takes. But it's not all the life of a movie star.
Bola understands the exhaustion of trying new treatments to manage sickle cell.
"It's really scary," she says. "You are coming from one treatment to another. It's really important to (never) stop believing. My key message is to go for it and don't stop believing that you can. Your life can get better."
Explore all the videos in Connecting the Dots here: www.medtechconnectingthedots.com
Did you know?
Sickle cell disease is a group of inherited red blood cell disorders that is more common in certain ethnic groups: people of African descent, including African Americans (1 in 12 carries a sickle cell gene), Hispanic Americans from Central and South America, and people of Middle Eastern, Asian, Indian, and Mediterranean descent, according to the American Society of Hematology.1
Healthy red blood cells are round and move through small blood vessels to carry oxygen to all parts of the body. In someone who has sickle cell disease, the red blood cells become hard and sticky and look like a C-shaped tool called a "sickle." Sickle cells die early, leading to a constant shortage of red blood cells.2
When these damaged cells travel through small blood vessels, they get stuck and clog the blood flow. According to the CDC, this can cause pain and other serious problems such as infection, acute chest syndrome and stroke.2
Approximately 300,000 babies are born with sickle cell disease each year. By 2050, the number of people with sickle cell disease is expected to increase by about 30% globally, according to the World Health Organization (WHO).3
Sickle cell remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa and India, where an estimated 50% to 90% of infants born with the disease will die before their fifth birthday, according to WHO. 4
References – accessed 29 April 2021
1 https://www.hematology.org/education/patients/anemia/sickle-cell-disease
2 https://www.cdc.gov/ncbddd/sicklecell/facts.html#:~:text=In%20someone%20who%20has%20SCD,and%20clog%20the%20blood%20flow
3 https://www.uptodate.com/contents/sickle-cell-disease-in-sub-saharan-africa#:~:text=Over%20300%2C000%20babies%20are%20born,individuals%20by%202050%20%5B3%5D
4Sickle cell remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa and India, where an estimated 50% to 90% of infants born with the disease will die before their fifth birthday, according to WHO.
5The Spectra Optia® Apheresis System, a blood component separator, is intended for use in therapeutic apheresis applications and may be used to perform Red Blood Cell Exchange (RBCX), Depletion, and Depletion/Exchange procedures.
The Spectra Optia system is available in select markets and protocol availability varies by country. Actual results may vary.
The views and opinions expressed in the film represent personal opinions based on individual experiences.