Break The Sickle Cycle: Impacts Of An Ignored Disease

Building your network is essential, especially when you are a creative. For some, it is easy to find contacts, particularly if your family has connections. Unfortunately for myself, being raised in a low-socioeconomic background, alongside battling a chronic disease, made this a challenge.

My name is Mojisola Aiyekusibe, I’m working to become a screenwriter and this is my story.

Sickle Cell Disease is a blood disorder that impacts millions of people around the world — but mainly people of color. This disease causes the red blood cells to form a sickle or banana shape instead of a circle shape. The sickle shape makes it easy for the red blood cells to clot, which causes an excruciating pain crisis that can last for weeks. All in all, battling this disease played a role in my journey because I required insurance to maintain good health.

Sadly, once I turned 18, I was removed from my parent’s healthcare plan. I didn’t have the money to pay for health insurance, and my parents were also struggling financially. Fortunately, during my 3rd year in college, a hospital social worker informed me that I qualify for disability benefits. I immediately applied and the State of Texas granted me disability, which meant my hospital bills would be covered fully by the government.

Although this was wonderful news, it did not fix everything. A downside of receiving disability benefits is the simple fact that the government thinks an individual can survive off of $700 a month. If a person qualifies for disability, you are not allowed to have more than $2,000 in your savings, which made it difficult to work. I was stuck between keeping my healthcare benefits to manage my disease or finding work. Over time, I chose to get off of disability and pursue my screen writing career by moving to California.

Being that I did not have connections in California, I could not find work easily. To help make ends meet, I spent time passing out samples at local Ralphs and Costco. Once I finally found a copywriting job, my employers did not offer health benefits, which was another downside. I tried attending networking events, connecting to companies online, but nothing seemed to work for me until I was accepted to the Creative Futures cohort in 2020.

I learned about Creatives Futures Collective through a Facebook page, thanks to Yahniee Bridges. This program was designed to empower creatives who come from disenfranchised backgrounds to help break the cycle of systemic inequalities. Creatives Futures believed in my talent and connected me with companies and mentors of my interest, which was an opportunity I never experienced before. Altogether, this platform placed me in the position to succeed regardless of my background, health, or financial status.

With that being said, I share my story today as the new staff writer for The Narrative. As my story continues, I’ve made it a priority in life to be an advocate for people of color who suffer from chronic diseases, such as Sickle Cell. Although I will never allow this disease to overwhelm me, there is power in sharing the knowledge and stories I have faced battling this disease.

Furthermore, I’ve made it a mission in my life to strive for better healthcare benefits for individuals with low-income while breaking down the systemic racism within the healthcare field. I believe stories will always be powerful, and I will continue telling my story to anyone who has open ears to listen. It’s time to break the Sickle Cycle and say no to systemic racism and discrimination in the healthcare field.

The Numbers

• 1 in every 365 African Americans are diagnosed with Sickle Cell Disease
• 1 in every 13 African American babies are born with Sickle Cell Trait
• There is currently no universal cure for Sickle Cell Disease; because it’s a disease that mainly affects people of color it is ignored and largely misunderstood with research for a cure being underfunded

The Action

• Learn more about Sickle Cell Disease at Sickle Cell Disease Foundation, Generation S and Change For Sickle Cell Disease
• Educate people in your circle about Sickle Cell Disease and it’s fatal impact on communities of color
• Follow Moji’s creative journey on Instagram