By Grace Q. Bryant
For over 15 years, Younee Prayer Excel Ballah, a young Liberian girl, has endured the debilitating effects of sickle cell disease, a condition she remained unaware of for much of childhood due to limited access to healthcare.
Despite immense challenges, Ms. Ballah has emerged as a powerful advocate, raising awareness and calling for improved healthcare for those suffering from the disease.
Sickle cell disease is an inherited blood disorder that alters the shape of red blood cells, causing them to become rigid and crescent-shaped.
These misshapen cells can obstruct blood flow, leading to severe pain, infections, and other serious complications.
Although the disease is prevalent in Liberia, knowledge about its management is limited, exacerbating the suffering of many affected individuals.
“My battle with sickle cell began at a very young age, but it wasn’t until I was older that I fully understood what was happening to me,” Ballah shared in an emotional interview.
“When I was just four years old, I experienced my first major crisis. The pain was unbearable, and my hemoglobin levels dropped dangerously low. I was rushed to the hospital and stayed there for weeks, but it wasn’t aware until much later when I was properly diagnosed with sickle cell disease.”
Growing up in Liberia, where healthcare resources are scarce, she often went without the necessary treatment and support to manage her condition.
This lack of access meant that for many years, she and her family were unaware of the full extent of her illness.
“Managing sickle cell has been extremely challenging,” she explained. “My mother has always had to spend a lot of money on my healthcare, whether it’s for hospital visits, medications, or creating a safe environment at home to prevent infections. The social stigma is also tough to bear. People don’t fully understand the disease, so they just see you as someone who is always sick, and that can be very isolating.”
In addition to physical pain and social stigma, the psychological toll of living with sickle cell disease is significant. “You constantly worry about your future; whether you’ll be able to hold down a job, how your illness will affect your relationships, or whether you’ll even survive. It’s a lot to carry, especially when you don’t have the support you need,” she said. “But through it all, I’ve leaned on my faith and the support of my family, especially my mother, who is my rock.”
She explained that her experiences with the healthcare system in Liberia have often been discouraging.
She recounted instances where she was denied a hospital bed due to congestions and had to be treated in a chair, despite being in severe pain. These experiences fueled her passion to start a sickle cell awareness campaign, with the hope of improving the treatment and support available to others suffering from the disease.
“My goal is to raise awareness about sickle cell disease in Liberia so that no child has to go through what I’ve been through. I want to see a future where children are born sickle cell-free, and those who do have the disease can receive the care and support they need,” Ballah narrated.
She is also advocating for the establishment of sickle cell centers across Liberia, where patients can receive specialized care and support. “People with HIV receive free medications and have access to dedicated resources. Sickle cell patients deserve the same level of care. It’s not just a deadly disease, it’s a painful and debilitating condition that affects every aspect of your life. We need more attention, more resources, and more compassion.”
Despite the daily challenges she faces, Ballah remains hopeful and determined to make a difference. “To everyone out there struggling with sickle cell, know that there is hope. You have a purpose on this earth, and your story isn’t over. And to those who have the means to help, please do. Together, we can create a future where sickle cell no longer holds us back,” she noted.
Ms. Ballah serves as an inspiration, proving that even in the face of adversity, there is always a light of hope.
“There’s always the possibility that you can die from the pain or complications that come with sickle cell. It’s heartbreaking. But God has been my anchor, and my family has been my support system,” she said.
Her mother has been her steadfast companion through it all, always there to provide care, comfort, and love. “My mom is my everything,” she said, her voice full of gratitude. “She takes me everywhere, ensures I get the best treatment, and never leaves my side.”
To those living with sickle cell, she offers a message of hope saying, “Know that you have a purpose. This is not the end of your story. You have people depending on you to be that great person you’re meant to be. Put all your energy into being more, and know that there is hope.”
In a country where the healthcare system often falls short, Ballah’s voice stands out as a beacon of hope and advocacy.
She is not just fighting for her own life; she’s fighting for the lives of countless others who share her struggle.
“We want to live in peace, not just rest in peace,” she said, a sentiment that underscores her unyielding determination to make a difference.
She urges those with the means to step in and help. “If you can, use your resources to support those with sickle cell. This isn’t a one-person issue; it’s affecting people everywhere in Liberia. My goal is that by 2030, no child will be born in Liberia with sickle cell.”
The mental and emotional toll of sickle cell is immense. “It’s a lot to carry,” she admits. “But I know that I still have a purpose on this earth. I’m here trying to be who I’ve been called to be, using my pain to help others.”
Her message to the world is clear: know your genotype. “It’s important to know what’s going on in your body, especially if you’re of childbearing age. Before you start a serious relationship, know your partner’s genotype. It’s crucial to understand the risks.”
