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Saturday, February 4, 2023

How one family is conquering Sickle Cell Disease

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Jasmine Winston and Mother
Jasmine Winston, age 21 battles sickle cell disease. The college senior is studying biochemistry and Spanish at Ohio State University in hopes of becoming a doctor one day to help people of color. Her mother JJ Winston, who is an attorney and long-time sickle cell disease advocate has written two books to raise awareness about the disease. Courtesy Photo/Winston Family

Jasmine Winston is studying biochemistry and Spanish at Ohio State University with a primary goal in mind. The 21-year-old, who battles sickle cell disease, hopes to work as a doctor one day and learn Spanish so that she can help others with the painful illness.

“Having sickle cell gave me the motivation to be a hematology oncologist, so I knew that I had to study science,” Jasmine told the Baltimore Times. “I study spanish because I know that sickle cell really affects all people of color, and I am hoping to go to Latin America and study the different variants.”

Jasmine’s mother, JJ Winston, has written two insightful books about sickle cell disease— “The Anniversary” and “The Commemoration.”

“My father passed away from sickle cell disease, and after he passed, I learned that my grandmother, two of my aunts, and my uncle passed away from the disease,” JJ Winston remarked. “When I was dating my husband, I learned that he was completely unaware [that he carried the gene],” Winston continued. “It was important for me to raise awareness, so I wrote a novel to try and do that.”

Both of Winston’s books are available at Amazon.com and www.novelistjjwinston.com. According to the U.S. Centers for Disease Control and Prevention, sickle cell disease affects approximately 100,000 Americans. It occurs among about 1 out of every 365 African American births and about 1 out of every 16,300 Hispanic-American births. Nearly one in 13 African American babies are born with the sickle cell trait.

“My husband and I worked really hard to ensure that Jasmine is a strong woman and that she has every opportunity available to her,” Winston asserted, noting the struggle her daughter — and caregivers — face each day.

“If you have a child with sickle cell, it doesn’t mean it’s the end of the world,”Winston declared. “Your child is still a wonderful child who will reach his or her goal, and you will, as a parent, help them. “It’s so important that caregivers don’t burn out. Don’t make everything sickle cell. Take time for yourself. Take an hour, read a book, meditate, or just get away from the situation for a moment. If you have one child with sickle cell and others who don’t have it, take time for them too. That is important.”

Jasmine added that her disease has helped make her stronger.“I have a high pain tolerance, and I know how to manage my pain,” Jasmine said. “Having sickle cell also forces the family to be a support group, and that is so important to have.”

Jasmine describes her pain as being similar to accidentally stepping on Legos. She said she feels pain all over, and visits to the emergency room are frequent.

“My doctors are really positive and helpful,” Jasmine remarked. “When I’m in the hospital — they know I’m studying to be a doctor — they help me with my homework and help me study for quizzes. That’s why it’s also important to be open with those around you about how you are feeling.”

The family makes sure to encourage others who are dealing with sickle cell. “It’s been an ordeal,” Winston reflected. “But it’s also a beautiful thing because Jasmine is such a beautiful person. I always tell her that I’d rather have her with sickle cell than not have her at all.”

Follow the family’s journey at www.novelistjjwinston.com, where JJ Winston offers free monthly newsletters and links to a YouTube page with a sickle cell challenge.


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