The Unspoken Battles of Sickle Cell Trait, Part 2

(Story continued from Part 1)

Yolanda Evans

Later in life, Yolanda found out she had a brother who also had sickle cell trait. “He died [by gunshot wound]. We found out the doctors could have saved him if they knew he had the trait. It’s an emotional rollercoaster,” she said.

Yolanda has taken her knowledge about sickle cell trait and become an advocate. She is Miss Bullitt Blast and uses her platform to educate. The Bullitt Blast pageant is in Shepherdsville, Kentucky, and part of the AmeriFest National Pageant system that inspires community service, leadership and building self-esteem.

Yolanda spoke about how managing sickle cell trait, having kids at a young age, and growing up in group homes gave her the opportunity to reach more people.  She emphasized the need to speak to multiracial families, saying, “The reality is that this is something that can happen to more than one race. It’s not just African Americans.”

Yolanda is Miss Bullitt Blast

With a passion for people to understand the disorder, Yolanda wants to continue giving back to her community. Her love for modeling and pageants has given her the confidence to be a positive influence. Yolanda plans to host a blood drive with the Red Cross and amplify the need for blood. “We all need to come together and be in a humility situation where we can help each other…Blood will save a life,” she reflected.

We are so thankful to Yolanda for being sincere and sharing her story. We encourage anyone who has the sickle cell trait to speak with their doctor about what it means for their health and family planning. The Red Cross is screening for sickle cell trait in blood donations for individuals who identify as multiracial, Black or African American. You can learn more here: Sickle Cell Trait Screening

The Unspoken Battles of Sickle Cell Trait, Part 1

Yolanda Evans

Yolanda Evans was born into devastating circumstances. “My mom gave me away at 2 weeks old. I was born in a group home with an elder lady, and I didn’t really know what was going on with me. I was sick a lot. My bones were fragile, and I was always falling and breaking them,” she said. Yolanda reflected on being at Kosair Children’s hospital throughout childhood.

It was after an accident in her teens that she was taken to the hospital and learned she had sickle cell trait. She left the hospital and never really thought about it or studied the disorder. Not to be confused with sickle cell disease, sickle cell trait is when a child inherits a normal gene and a sickle cell gene, according to the CDC. Sickle cell trait can never turn into sickle cell disease, but the trait can be passed down. A child can develop sickle cell disease if both parents have the trait.

Most people with sickle cell trait experience no symptoms, and that’s why it can go undetected. Yolanda is part of the rare group that does experience symptoms. “It was when I turned 15 and got pregnant that I started learning about the blood disorder,” said Yolanda, “Complications started coming. My son was born when I was 16 and he has sickle cell trait. I had my second child at the age of 18. They thought my daughter would be deformed from having sickle cell disease.”

Yolanda and her daughter

Yolanda underwent blood testing and the agony of waiting to hear about her daughter. “Thankfully, she didn’t have the disease. She also has the trait,” she said. “This is something that could have been very scary for my children. I was unaware.” Sickle cell trait testing at birth was not widely provided until 2006.

Yolanda experiences pain crises in the form of cramps and urinary tract infections. “Rest and staying hydrated helps. I tell people I have to sleep for 9 hours a day. Sometimes I schedule off with my job to rest. They know what’s going on and are supportive,” she said. She knows when a pain crisis is usually coming because her platelet count gets low.

In comparison, people with sickle cell disease have “bizarre pain. It almost feels like having a baby. It’s so bad you can’t tolerate it and need to go to the emergency room,” said Yolanda. Patients with sickle cell disease typically require blood transfusions to keep their blood from sickling.

Her connection to sickle cell unfortunately goes further. Yolanda had a childhood friend in her group home who died from sickle cell disease. “Her and I would always talk about the different things she was going through. I would relate to some of the pain. It makes me emotional. It’s something really dear to my heart,” said Yolanda.

(Story continues in Part 2)

Atlanta Born, Louisville Inspired: Dr. Ricky Jones, Part 2

 (Story continued from Part 1)

Dr. Ricky Jones and previous Red Cross staff, Yulee

Ricky describes the continuous shortages in the blood supply as hurtful and disturbing, saying, “While we do this for sickle cell, people don’t understand that the Red Cross isn’t just that. The Red Cross is providing a blood supply for all kinds of issues. My grandmother who raised me, she died of multiple myeloma in 2009.”

Dr. Ricky Jones and Grandma, Linnie Mae Jones

Ricky’s grandmother needed blood transfusions while going through cancer treatments. Two loved ones in his life have depended on the generosity of blood donors. “What people don’t understand is when you give blood, that really is the gift of life. People need blood transfusions to survive... Certainly people who have suffered catastrophic injuries,” said Ricky.

Ricky acknowledges the struggle of getting the Black community to donate blood. “There’s always been a tenuous relationship between the black community and health care. There’s a built-in historical fear. We work to counter that as much as possible…It’s very tough to wrestle history in the immediate present,” he said. He is thankful that the Red Cross continues to raise awareness about the disease.

On a personal level, Ricky is tied to his community. He said, “I’m a teacher first. I believe in academic excellence and social responsibility. I’m an Atlanta kid but have been deeply involved in Louisville.” Any openings in his schedule are usually spent traveling with his daughter, Jordan, who plays travel volleyball.

Jordan Jones, KIVA volleyball player

The Red Cross deeply appreciates Dr. Ricky Jones for making sickle cell awareness a priority. He’s a natural leader in this community and we know he has helped many youth minds at UofL! #sicklecellawareness #sicklecell #Joinedbyblood

Atlanta Born, Louisville Inspired: Dr. Ricky Jones, Part 1

 

L to R: Kerry Norwood, Dr. Ricky Jones

When Kerry Norwood was a child, doctors did not think he would live past 16 years old. He was born with sickle cell disease and missed a lot of school due to being ill. Growing up in Atlanta, Kerry befriended Ricky Jones in 8^th grade. “He was nice to me. We lived in adjacent neighborhoods and played in the band together,” said Ricky.

That’s when Ricky started to learn about sickle cell disease. “I was a kid. I didn’t know anything about it. Because of Kerry, I learned about the disease and how it impacts people,” said Ricky. Kerry and Ricky have been lifelong friends ever since. They mean the world to each other. They are family.

September is Kerry’s birthday and sickle cell awareness month. Kerry celebrated his 56^th birthday last year, despite what doctors feared. Ricky is now Dr. Ricky L. Jones, Professor at the University of Louisville. Baldwin-King Scholar-in-Residence at the Christina Lee Brown Envirome Institute and past chair of the Pan-African Studies Department.

A few years ago, Ricky spoke with the Red Cross about doing a blood drive specifically for sickle cell disease. “As Kerry aged, he has needed more blood transfusions. Sometimes it would be difficult for him to get access to blood,” Ricky said. “I said: you know, there are people going through this all over the country. It would be cool if we could do something targeting just sickle cell.” The Red Cross didn’t have their sickle cell initiative program at that time, so in many ways, Ricky created this idea and let it grow.

Ricky originated the Pan-African studies sickle cell blood drive at the University of Louisville. It’s hosted around Kerry’s birthday every year. “We are trying to do a little bit to help people struggling with the disease. It disproportionately affects African Americans or African descended people. But a lot of people don’t know that,” said Ricky.

Dr. Ricky Jones

How does he recruit blood donors on campus and in the community? “I tell my story. I make it personal,” Ricky said. He shares about his friendship with Kerry and offers extra credit for donating blood. Ricky’s message is inspiring because it’s vulnerable and raw: “Think about the people around you who you love most in this world. What if they needed blood because of some accident or some disease they are suffering from. How would you feel if there was no blood available?”

(Story continues in Part 2)

#TeamUp4SickleCell to Help Patients During Sickle Cell Awareness Month

“I was born with sickle cell. I wasn’t diagnosed until 11 months old, but I’ve known my whole life. I’m the only person in my family with it.” Quin Peake is the oldest of 3 girls in her immediate family. Her mom is one of 14 children, and her dad is one of 8 children. Both of her parents have the sickle cell trait, which is how Quin got sickle cell anemia.

After sharing her story, Quin can easily be described as resilient and brave. “I remember one year alone needing 23 pints of blood. Sometimes I would get hyper transfused, and get 3 units of blood instead of one,” said Quin. She grew up in Southeastern Kentucky in Neon where deadly flooding hit in July. Her family is okay, but their house and cars were damaged.

Quin receives most of her treatments at UK Hospital. She attended college at University of Kentucky and started volunteering with the blood center. “I started sharing my story more and discussing it. Now I’m an advocate for research, funding, and blood donation,” commented Quin. Her hematologist is a professor at UK and invites her back to classes when they are studying sickle cell. She enjoys answering questions and providing insight from a patient perspective.

One doctor predicted that Quin has received well over 500 pints of blood in her life. At 41 years old, she is hopeful for the future of medicine, saying, “There’s not a universal cure for sickle cell- although there are good things in the works. Things like gene editing, bone marrow, and stem cell. There’s a promise.” She is dedicated to learning all she can about the disease and is still educating herself to this day.

Quin knows the red flags that come along with sickle cell. “I can tell [when I need a transfusion] because my energy is low.” With the massive amount of transfusions she has received over the years, her body has built up antibodies and antigens. Due to this, it can be hard to find a blood match for Quin. “I am most likely not going to get transfused immediately,” she said. “It will likely be a day or 2 later while they try to find a match. With the antigens in my body, [the blood will] need to be closely compatible. My donor will probably be African American because our anatomy is similar.” 

Quinn is dedicated to sharing her story and letting people know the need for blood is always there. She has had neighbors in her town giving blood because of her story. She attends sickle cell conferences with the medical community and sessions for patients. It can be a complicated disease to understand and navigate, and Quin continues to be an inspiration to those around her.

One in 3 African American blood donors are a match for people with sickle cell disease. We are encouraging all donors who identify as Black or African American to schedule an appointment to give blood. You can schedule your appointment by going to redcrossblood.org. #TeamUp4SickleCell #BlackBloodDonorsNeeded

Omega Psi Phi Blood Drive Honors Dr. Charles Drew, Supports Sickle Cell Patients

Omega Psi Phi Fraternity, Inc. will be hosting a blood drive on Monday, November 15 from 10am-3pm at the American Red Cross at 510 E. Chestnut Street, Louisville, KY.

Severe pain, stroke and organ damage are sickle cell
disease complications. Transfusions provide healthy
red blood cells to deliver oxygen through the
body and unblock blood vessels. 

The blood drive honors the work of Dr. Charles Drew, the first Medical Director of American Red Cross Blood Services, and is part of the Red Cross sickle cell initiative blood drives. Patients living with sickle cell disease often face ongoing blood transfusions, and helping donate can make a lifesaving difference. That is why the American Red Cross has launched an initiative to grow the number of blood donors who are Black to help patients with sickle cell disease. The blood drive will also focus on Sickle Cell Trait Screening.

Sickle cell is the most common genetic blood disease in the US. Blood transfusion is a key treatment. Most patients with the disease are of African descent and rely on blood given by people of the same race or ethnicity.

“Partnerships with national and local organizations within the Black community are critical to building trust, sharing information, and working together to engage new donors to help save lives,” said Kevin Holston, Theta Omega Chapter of Omega Psi Phi.

All presenting donors will receive a $20 gift card by email, thanks to our partners at Amazon. Donors are encouraged to make an appointment by calling 1-800-RED CROSS, visiting RedCrossBlood.org or downloading the free Blood Donor App.