She felt powerless at times. Every morning, Genesis Jones wakes up knowing her days will be filled with pain. Jones, 20, has been fighting painful episodes since she could remember.
A nursing student at Richland College, Jones has been battling excruciating and constant bodily pain since she was 3 years old. She has also had two silent strokes, frequent blood transfusions, hospital visits and dealt with major depression as a preteen.
Jones was born with sickle cell disease, a group of inherited red blood cell disorders that cause pain throughout the body and can cause life-threatening complications such as stroke or organ failure.
In sickle cell disease, the cells are shaped like a crescent instead of a doughnut. The misshapen cells cause the sickle cells to die early, which then causes a shortage of red blood cells, and when they travel through small red blood vessels, they get stuck and clog the blood flow.
Today, Jones is in search of a matching blood stem cell donor, the only known cure for sickle cell disease.
“I plan my life around my pain,” Jones said. “I have been in and out of the hospital growing up and had my first stroke at the age of 8. I wake up daily and I wait to see how I feel at that moment and kind of just get going. I just learned to cope with what I have with a lot of different strategies and manage how I feel with my back, which is where I usually have my pain. I just keep going because I know it is always something that is going to be there, and I just focus on more of the things I need to do, like school.”
Jones is one of approximately 100,000 African Americans battling sickle cell disease.
Sickle cell disease disproportionately affects African Americans. It is estimated that sickle cell disease occurs among about 1 out of every 365 Black births, and that 1 in 13 Black babies are born with sickle cell trait, according to the Centers for Disease Control and Prevention.
Jones has been waiting her whole life for a donor and continues to patiently wait to find a genetically matched blood stem cell donor.
She is having trouble finding a donor due to the lack of Black donors on the Be The Match Registry, a nonprofit national marrow donor program.
Erica Sevilla, multicultural public relations strategist for Be The Match, said the need for more African American donors is critical.
“There is a disparity that people need to be aware of,” Sevilla said. “Black lives and patients are being affected by the lack of donors on the registry. Only 4% of the 20 million potential donors on the Be the Match Registry are identified as Black or African American. So that is less than 1 million of the 20 million people. Because when you are looking for a blood stem cell transplant, it relies on more than just blood type; it is actually something called HLA, which is a unique identifier in our blood. We are looking for a match that, often times, you’re more likely to find a match from someone who shares your race or ethnicity, and so a Black patient is more likely to find a match from someone within the Black community.”
Sevilla said as many as 4 out of 5 Black patients are unable to find a match on the Be The Match Registry compared to the 4 out of 5 White patients who do find a match.
“African Americans have the lowest chance of finding a match today and it is absolutely critical to get more donors so it can provide hope for patients like Genesis,” Sevilla said. “The good news is that more ethnically diverse donors joining the registry can resolve this disparity. Patients are most likely to find a match among people who share their heritage. More mixed-race, African American, Hispanic and Asian donors are urgently needed.”
Sevilla said it only takes a cheek swab to join the registry and a swab kit can be mailed to one’s home. Persons interested who are ages 18 to 44 can register for free on Jones’ behalf at http://join.bethematch.org/swab4genesis.
Jones receives blood transfusions monthly, along with being in and out of the hospital four or five times a month, and said the disease has left her battling not only her physical health but mental health also.
“I was challenged not only with my health, but with problems at school and home, and started experiencing major depression around the age of 9,” Jones said. “The transfusions were supposed to help with the prevention of crisis and strokes. However, I had another silent stroke when I was 10. With a lot of time and patience, I’ve learned how to better maintain my physical, mental and emotional health. To this day, I am still going to the hospital for appointments, unexpected ER trips and pain management. But I have faith that my pain will continue to get better and I will find my perfect match.”
She details the struggles of living with sickle cell disease.
“In the beginning, it was terrible having to constantly live in pain from a young age because I was in elementary school and I was missing activities with my friends having to be in the hospital and not in school,” she said. “Not being at school with my friends was very hard and that’s where a lot of my depression came from.”
Despite the struggles, Jones said she gained a lot of coping strategies.
“I learned to lean on my support team with my family and I think that helped me change my mindset about living with pain,” Jones said. “And, over time, it has become easier for me to walk everyday with pain and learn how to manage it on a daily basis.”
Jones manages her pain by taking pain medication.
“I take my daily medications and I have a pill regimen that I am on and I work very closely with my doctors to make sure that my pain level is the lowest level it can be on a daily basis,” she said. “With my strategies, I just know that I have my goals, and I learned not to focus so much on the pain like I did when I was younger. I just have to deal with it in order to reach my goals. I just need to keep going.”
Jones has been on the donor list for more than 10 years and has yet to find a matching donor.
“Black genetics are very complex and there is a lack of African American donors on the registry, which makes it very hard for me to find my perfect match,” she said. “To get the word out there, I share as much as I can with Be The Match. The lack of diversity on the registry is just sad and it’s harder for me to find my donor.”
Jones believes there is a lack of donors of her race due to a lack of knowledge.
“I really think it is lack of knowledge or awareness because a lot of people don’t know about the registry because it’s a very personal issue,” Jones said. “I think until something happens to you personally, you are not going to be aware or going to take more action until something happens to you. But I think the lack of knowledge is also there. If you are able to give more knowledge out there to people, I think it will be more clarity and more people would join the registry.”
There are no side effects for the donor and it’s as simple as donating plasma and blood.
“It takes only a couple of hours and it would completely change my life,” Jones said. “I think people should donate because it is very much for a need, just like a need for organs. So the more people on the registry, the more people can help other people by changing their lives and their families, so it’s going to help anyone.”
Jone said sharing her story on Be The Match has been the best part about her journey.
“Sharing my story has been a blessing,” she said. “My message is that living with sickle cell has definitely been hard and walking in pain everyday has made me stronger as a person and definitely changed my viewpoint on my life, but I wouldn’t of had it any other way because of the opportunity I have had and the awareness that I have brought to sickle cell and to the Be The Match Registry.”
Jones’ future goals include graduating college, becoming a nurse and continuing to create awareness about sickle cell disease and the lack of donors for minorities. She would also like to find a way to find a cure for sickle cell.
Her biggest accom-plishments so far have been graduating high school in three years instead of four.
“It felt amazing to graduate early at Grapevine High School, and it was a big accomplishment because those long days and hours were hard for me to deal with, and I was so glad I was able to do that,” she said.
Jones also has some advice for those who share her disease.
“You are not alone, and it is possible to live with pain and have so many accomplishments,” she said. “There are so many ways to cope with pain, and you can have a great support system and then just learn how to manage it within your own way.”