Sickle cell disease (SCD) is a group of inherited red blood cell disorders. People with the genetic condition have abnormal hemoglobin in their red blood cells. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. The most common type is known as sickle-cell anaemia (SCA). It is responsible for a number of health problems, such as attacks of pain, swelling in the hands and feet, bacterial infections, and stroke. Long term pain can develop as people get older, with the average life expectancy between 40 to 60 years.
My name is Leathia Boyd and I’m the founder of a 501c3 organization called Super Moms with Sickle Cell Inc. I’m a 38 year old Black woman, mom, and wife who also happens to have sickle cell anemia.
I’ve been an advocate all my life, but I only got serious about it 7 years ago. I used social media to start an on-line support group for people with sickle cell, and it developed into a strong community.
I ran that group for about 3 years, and I mentored kids and adults all over the world with sickle cell. During that time, I learned that our mothers had slightly different stories and needs. I eventually started another group, Super Moms with Sickle Cell.
It was a place to let the moms in our community express their feelings in a positive and supportive environment. It also removed the awkwardness from being in a larger group of carriers who did not have children, so did not connect or respond to stories from moms.
I listened to the women and learned that so many of the moms are single, because the men decide they could deal with the woman being sick all the time. They leave, so these women feel abandoned and alone, and deal with pain on a daily basis. Those mothers have no support system, and that is when I had to do something.
I took the group beyond social media and started a nonprofit organization. A small group of women vowed to help me get the word out about sickle cell anemia, and in the process of spreading the awareness, we work towards expanding our support community for mothers with sickle cell. I want to make life easier for them by being the support system they need, and offer homes where their children can stay when mom has to be admitted for medical treatment. We have to prolong the live of moms for the care of their children.
My organization is the only one of its kind in the United States that focuses only on mothers with sickle cell, with their care and support. So far, on our “spread the awareness” journey, we have held two fashion shows in St Petersburg, Florida. Here in Milwaukee, we have had 3 community blood drives, and will be hosting another very soon.
We have also held 3 community Meet-N-Greets, bowling events that are held every year on National Sickle Cell Awareness Day, which is June 18th. We also have our Christmas Teddy Bear Drive, where we collect Bears and give them to the kids who are admitted on Christmas eve and day.
I have events that go on in 5 states, in conjunction with the events that are held here in Milwaukee. I do this with no college education, no degrees, no business knowledge, just a determined Black girl who needs the world to hear my story and others with sickle cell.
My goal is to make Super Moms with Sickle Cell Inc. a household name for the black community like Susan G. Coleman is to the Cancer community.
When I am in pain and I do not want to go on anymore, because I am tired of fighting, I remember that I am on a mission to help others. I cannot let them down. I will dіе with sickle cell, maybe even as a result of it, but I refuse to stop fighting until the end.
I have to be heard and tell my story. We will one day get a cure, and my organization will do our part to inform the world on this disease that 100,000 people have in America. Many people fight every day, while many people do not care. We get treated as drug seekers because our pain is invisible. The test on our blood do not express this condition, it does not measure the pain we feel.
Many have died in the sickle cell community this year. We are fighting for a cure to stop the suffering and dеаth. There were expiration dates put on my life at a young age, and I have bypassed both of those. Everything after age 12 became bonus days and years for me.
September just ended National Sickle Cell Awareness month, and I hope someone learned something new, I hope I made you want to learn a little more, and share it with the next person.
Marcus Williams and Aza Comics