“Living, despite everything”, Mariama Bailo’s fight against sickle cell anemia

Affected by sickle cell anemia, a genetic disease that disrupts every moment of daily life, Mariama Baïlo Diallo nevertheless refuses to let herself be defined by pain. Student, activist and spokesperson for sickle cell patients, she transforms her fragility into strength and her story into commitment.

Through her testimony, she recalls the urgency of better understanding and real support for those who, like her, struggle every day simply to live.

When she enters the room, her step slow but assured, nothing suggests the silent battle she has always been waging. Diallo Mariama Baïlo, a student at the end of her journalism degree at the Higher Institute of Information and Communication (ISIC) in Kountia, carries a genetic disease of which she only really became aware at university. It's sickle cell anemia.

“I had to take the screening test. When I really knew that I had the disease, I told myself that I was going to die.” she confides.
She was 19 years old at that time. The world is cracking. Thoughts race between fear, death, the blurring future. Then she breathes, gets up. “Man proposes, God disposes and nature imposes itself. I finally accepted,” she said with confidence

Learn to live with the unpredictable

At Mariama, crises don't need invitations. While the battle promises to be arduous against this genetic pathology, the patient does not cross her arms. “Sometimes you don’t need to look for illness. It comes naturally”, regrets this student.
But often, fatigue plays the role of a match for Mariama: one outing too many, a forced activity, a shortened night.

When pain hits, it immobilizes everything: “It’s as if I’m tied to one place, I can’t do anything. I don't sleep at night. » Crises steal days, sometimes weeks. They take away lessons, projects, and activities that are important to him. Mariama explains: “I can’t go anywhere. I'm either at home or in the hospital. » However, Mariama does not give in. She organizes, she anticipates, she fights. Always.

The strength of an entourage who understands

Her luck, she repeats, is her circle, her entourage. “I was lucky to have a very understanding family. My friends tell me: “Bailo, you are strong. You will succeed” “, she says. In an illness where incomprehension hurts as much as physical pain, these voices matter. They carry, they relieve, they prevent the isolation and depression omnipresent in many sickle cell patients.
But she holds her greatest weapon in her hands: her pen. She writes.
“When I write, I free myself. It’s like I have a burden on me,” she says.

“Sickle cell anemia does not define me”

Through her commitment to the Sickle Cell Action Network and FEDIPAD, Mariama has chosen to transform her vulnerability into strength. With this network, she speaks, she testifies, she informs. Because she knows that silence kills faster than illness.
“Sickle cell anemia is not inevitable. Illness does not define me,” she reassured. This is his point of support. And she also transmits it to other sickle cell patients.
“Have a mind of steel. We must accept the illness, but we must also know that it does not define us,” advises the activist.

Call to understand, to support, to act

Mariama says it with firm, almost painful gentleness. Because every word she says is real. “We are already struggling to live. So if you have a sickle cell patient by your side, know that we are not lazy. Illness itself is fatigue,” confided this patient. We don’t understand it well because living with sickle cell disease means surviving every day. It’s hiding suffering behind a smile. It is moving forward while the body calls for rest. “When a sickle cell patient tells you: ‘I’m tired,’ just tell him: go and rest”, advises Mariama.

His latest message is not only addressed to loved ones, nor to health authorities. It concerns us all. Accept, understand, relieve, do not judge, do not minimize.
“Support associations, encourage screening, talk about the disease. Making sickle cell anemia a national cause,” pleads the patient.
Because behind every crisis, every sleepless night, every silence, there is a person fighting to live. As is the case with Mariama Baïlo, who should never fight alone.

According to the WHO, approximately 7.7 million people have sickle cell disease worldwide, an increase of more than 40% since 2000. Sickle cell disease is estimated to cause more than 375,000 deaths per year.

Kadiza SOW