Sickle Cell Consciousness month takes place in September within the U.S., and has a world day of recognition on June 19, however those who undergo with the debilitating illness should face its signs and challenges on a full-time foundation. Whereas predominantly affecting black communities, sickle cell touches the lives of all colours and creeds and the friendship between highschool athlete JD Slajchert and his largest fan, Luc Bodden serves to remind us that larger consideration and understanding of Sickle Cell actually is the important thing to crushing it.
For his half, JD (James Davis) Slajchert was a preferred highschool basketball participant when a lifechanging encounter with younger Luc Bodden positioned him on a journey of discovery that might reverse the roles and make Luc the hero and Slajchert the impressed follower. Decided to proceed Luc’s legacy after his premature demise, and to enhance the outcomes for others with Sickle Cell Illness, Slajchert wrote the emotional novel, Moonflower, and continues to champion the LucStrong Basis.
The campaigner sat down with M&F to speak about his continued devotion to creating a optimistic influence in such an necessary space. “At first, once I met Luc, I’d truly by no means even heard of Sickle Cell Illness earlier than, not to mention have even a primary understanding of its significance or the way it impacts the physique within the slightest,” says Slajchert. “I would like others on the market like me, who at one level didn’t know something about it, to ask questions with out feeling dangerous, and hunt down the correct info.”
What’s Sickle Cell?
Sickle Cell Illness (SCD) is a genetic blood dysfunction. It isn’t viral or bacterial, so it’s not contagious however quite inherited when a baby receives two copes of the sickle cell gene (one from every guardian). Whereas it’s most typical in folks of African, Mediterranean, Center Japanese and Indian ancestry, it could have an effect on anybody. Sickle Cell Illness causes red blood cells to become sickle-like, making them stiff and sticky and resulting in infections, ache, anemia, and organ injury. It’s curable via bone marrow or stem cell transplants in lots of circumstances however stays a power situation requiring lifelong care and is commonly deadly. One study reports that SDC impacts 100,000 folks in the USA, with effectively over 700 deaths within the U.S. yearly.
Slajchert was taking part in basketball for the UC Santa Barabara Gauchos, when he discovered himself inextricably linked to the sickness. As an avid fan, SCD sufferer Luc Bodden had merely needed to satisfy his hero. “His older sister arrange a sport of basketball for us to play towards one another although I used to be 17 and he was 6, and I used to be about triple his personal top. Luc didn’t appear to care,” recollects the athlete, fondly. “Luc ripped the ball from my palms and got here proper at me, speaking a complete bunch of trash instantly. His snappy, witty persona shined via immediately and it made me so intrigued to be taught extra. I used to be so impressed by his confidence.”
That devoted encounter would result in an epic bond that started with basketball however went a lot deeper, persevering with via mutual respect. “In spending extra time with Luc, I additionally noticed his resilience and perseverance,” says Slajchert. “He had a lot information and such a singular zest for all times at such a younger age, which I might come to be taught was simply a part of his magic. Luc all the time made everybody fortunate sufficient to be round him smile.”
Researching the illness that affected his new pal turned a severe mission, and Slajchert was shocked by what he found. “Sickle Cell Illness is a tough and complicated sickness for a myriad of causes,” he tells M&F. “And never all of those difficulties are purely medical. It’s a severely underfunded, underacknowledged, and underserved sickness.”
Consciousness of Sickle Cell
There are nonetheless sadly a variety of misconceptions round Sickle Cell, like the inaccurate perception that it solely impacts black folks. SCD is genetic, not a germ, and diagnosing it may be tough as a result of signs range or will be late to develop. “Some early clues that folks ought to pay attention to of their youngster doubtlessly having this sickness are sometimes episodes of extreme and random bouts of unprompted ache, going down wherever within the physique,” explains Slajchert.
“The rationale for the unpredictable places of ache is as a result of it’s a blood illness that may have an effect on practically any main organ at any time. The signs and issues of Sickle Cell Illness can begin at any age. You possibly can see infants beginning to present a few of these signs when as younger as 5 or 6 months previous. It’s a harrowing and tough sickness to fight on condition that it could strike at a second’s discover and be extraordinarily debilitating.”
Luc Bodden underwent a bone marrow transplant aged 7 however handed away when he was simply 10 years previous. The LucStrong Basis was based in his honor by his dad and mom Matthew and Stacy Bodden, and its work been near Slajchert’s coronary heart ever since, persevering with to boost consciousness through his first novel, MoonFlower, impressed by their friendship. He additionally facilitates higher communication between donors and kids. “Sadly, what has shocked me probably the most about this sickness is the surprising quantity of racial inequalities and disparities that exist surrounding it,” shares Slajchert of his expertise. “It’s extensively argued that as a result of it’s primarily thought-about a ‘black’ illness, there isn’t as a lot analysis and funding allotted in the direction of discovering extra inexpensive cures and coverings.”
Slajchert says he has been compelled to talk out about SCD to redress this inequality. “This coming fall, I’m additionally set to ship a TEDx Speak at Unity Park in Greenville, South Carolina,” he shares.
As a part of its work, The LucStrong Basis supplies grants to households with kids who’re going via the complicated bone marrow transplant course of. “As you may think about, the monetary burden that these households endure is extremely important and cumbersome,” says Slajchert. “Subsequently, this help supplies a much-needed beam of assist for these most in want. The most effective half is that households can use this grant nonetheless they deem most important—no questions requested. They might use it to assist with unexpected extra medical prices, grocery payments, or we’ve even seen it cowl one thing so simple as hospital parking. In truth, we had a household that we supported who, throughout their youngster’s bone marrow transplant course of, racked up over $5,000 {dollars} in hospital parking payments alone.”
The Relationship Between Sickle Cell and Train
These with the Sickle Cell Trait (SCT), that means that they carry just one sickle cell gene, are sometimes in a position to train and play sports activities at a excessive degree. The NFL’s Ryan Clark was diagnosed with SCT in 2007 whereas taking part in for the Pittsburgh Steelers after the excessive altitude skilled throughout a sport towards the Denver Broncos triggered issues that later required surgical procedure. Clark managed his situation and went on to win a Tremendous Bowl with the Steelers in 2009. Alternatively, people with each genes, enduring Sickle Cell Illness, are at a a lot increased danger of great issues throughout extra strenuous sports activities.
“Nevertheless, it’s in truth promising to see that research suggests light-to-moderate exercise may be providing individuals with SCD some health benefits,” says Slajchert. “One of these train may embody elevated every day strolling or particularly tailor-made cardio classes on a stationary bike. Science has proven that this type of train helped improve the floor space via which oxygen and vitamins may move between blood and muscle. All of that is very promising not simply bodily for these battling SCD, however mentally as effectively.”
This September, similar to at every other time of the yr, Slajchert continues to boost the attention that Sickle Cell Illness so deserves. His characteristic on Spectrum Information 1,titled Past the Sport: JD Slajchert and the LucStrong Basis, was not too long ago nominated for an Emmy.
“I need to see extra people come ahead and bravely communicate for these unstated hundreds of thousands across the globe silently going to struggle with this sickness each day,” he tells M&F. “They want our assist. I do know, and perceive clearly, that being a loud voice for Sickle Cell Illness is my raison d’être primarily based on my firsthand expertise in watching Luc throw punch after punch towards this illness every second of his life, however I’d wish to problem others to do the identical and march beside us. From there, I do know we are able to then put the stress on the powers at be to implement actual change.”
JD Slajchert will ship his TEDx Speak at Unity Park in Greenville, SC the place he’ll be talking extra about his work with SCD and Luc’s legacy on Nov. 19, 2025. To attend the event, click here.
For more information on the LucStrong Foundation click here.
To comply with JD Slacjchert’s progress on Instagram, click here.
