From crisis to catalyst
Sickle cell disease patient recalls his battle with the disease and ways you can help .
Juice Staff Published: 9/20/2019
Clayton “DJ” Martin is a confident and charismatic young man. As the founder of The Benjamin Ivory Foundation — a nonprofit organization that educates, advocates, and assists in optimizing the overall health of those living with sickle cell disease — he’s active in the community, always working to connect patients and families to resources and support.
The cause is personal to DJ. He’s lost loved ones to the disease and lives with it himself. He prefers to think of himself and others as a “sickle cell warrior” because the disease is a daily battle.
Thankfully, it’s not one that he has to face alone.
A lifelong battle
Sickle cell disease is named for the thin, crescent-shaped red blood cells that face more difficulty passing through blood vessels. It is passed down through families and primarily affects people of African and Mediterranean descent, though it is also common among people from South and Central America, the Caribbean and the Middle East. Approximately 1 in every 365 African-American children is born with sickle cell disease.
DJ was just 18 months old when he experienced his first sickle cell crisis, a common symptom of sickle cell disease that brings excruciating pain as sickled red blood cells block blood vessels throughout the body. He began treatment at Wolfson Children’s Hospital and has since received care from Baptist Health doctors. His battle with sickle cell has taken an extreme toll on his health; he was diagnosed with avascular necrosis in his left hip in 2001, and end-stage renal failure in 2004.
Despite the challenges, he has found comfort in knowing his doctors have his health — and best interests — at heart.
“My experience with Wolfson Children’s and Baptist Health have always been positive,” he said. “Whenever I am admitted, the doctors and nurses always make sure that care is up to standard and beyond. As a patient of Dr. [Haritha] Sakhamuri, I’ve seen her take command of my care while hospitalized to make sure I am comfortable, and that my health and stay is short, but effective.”
For a long time, DJ was ashamed to share his experiences with others.
“I remember when I was growing up, I wouldn't tell anyone that I had sickle cell. I wanted to appear as normal as possible,” he recalls.
That mindset changed as he learned that the disease affected some of his family members and close friends. He came to view the disease as a catalyst to achieve goals and chase dreams.
While enduring dialysis treatment throughout high school and his initial college career, he kept working to achieve his academic goals. DJ received a kidney transplant in 2011 and was later accepted to Jacksonville University, where he completed his bachelor’s degree in 2013.
“There were so many times I would have a paper due or a test to prepare for and a crisis would send me to the hospital just days before. It took me about seven years to complete my bachelor's degree due to the setbacks and complications that come with sickle cell,” he said.
In 2016, DJ lost a close friend to sickle cell disease. In honor of his friend, he started his foundation, which helps patients and their families deal with sickle cell disease through a much-needed support system and access to additional resources.
With dreams of completing law school, DJ has an end goal of becoming a legal advocate for sickle cell patients and veterans, or a judge in the health care sector.
Supporting sickle cell warriors
While there is no universal cure for sickle cell disease, blood transfusions can help sickle cell warriors manage the disease’s symptoms. Transfusions can help increase the amount of healthy red blood cells in the bloodstream and lessen the effects of the sickle-shaped cells.
Blood donors are critical to the long-term treatment of patients living with sickle cell disease. The best transfusion matches are likely to be found within a patient’s own ethnic group. Through Baptist Health’s partnership with LifeSouth Community Blood Centers, blood donors can inquire about becoming a Sickle Cell Hero. Donors whose red blood cell antigen profile is critical to the ongoing treatment of these special patients.
In observance of Sickle Cell Awareness Month, LifeSouth invites eligible donors to visit its donor center at Baptist Medical Center Jacksonville to learn more about how to support local sickle cell warriors. For hours and online scheduling, visit LifeSouth.org.