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 endure 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 will reverse the roles and make Luc the hero and Slajchert the impressed follower. Decided to proceed Luc’s legacy after his premature dying, 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 essential space. “At first, once I met Luc, I’d really by no means even heard of Sickle Cell Illness earlier than, not to mention have even a fundamental understanding of its significance or the way it impacts the physique within the slightest,” says Slajchert. “I need 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 right info.”
What’s Sickle Cell?
Sickle Cell Illness (SCD) is a genetic blood dysfunction. It isn’t viral or bacterial, so it isn’t contagious however quite inherited when a baby receives two copes of the sickle cell gene (one from every mother or father). Whereas it’s most typical in individuals of African, Mediterranean, Center Japanese and Indian ancestry, it might probably have an effect on anybody. Sickle Cell Illness causes pink blood cells to grow to be 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 instances however stays a continual situation requiring lifelong care and is commonly deadly. One examine studies that SDC impacts 100,000 individuals in the US, with nicely over 700 deaths within the U.S. yearly.
Slajchert was enjoying 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 in opposition to one another even though I used to be 17 and he was 6, and I used to be about triple his personal peak. Luc didn’t appear to care,” recollects the athlete, fondly. “Luc ripped the ball from my arms and got here proper at me, speaking an entire bunch of trash instantly. His snappy, witty character 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’d come to be taught was simply a part of his magic. Luc at all times made everybody fortunate sufficient to be round him smile.”
Researching the illness that affected his new pal turned a critical 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 plenty of misconceptions round Sickle Cell, like the inaccurate perception that it solely impacts black individuals. SCD is genetic, not a germ, and diagnosing it may be tough as a result of signs fluctuate or might be late to develop. “Some early clues that folks ought to concentrate on of their little one doubtlessly having this sickness are sometimes episodes of extreme and random bouts of unprompted ache, happening anyplace 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 problems of Sickle Cell Illness can begin at any age. You may see infants beginning to present a few of these signs when as younger as 5 or 6 months outdated. It’s a harrowing and tough sickness to fight provided that it might probably 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 outdated. The LucStrong Basis was based in his honor by his mother and father Matthew and Stacy Bodden, and its work been near Slajchert’s coronary heart ever since, persevering with to boost consciousness by way of his first novel, MoonFlower, impressed by their friendship. He additionally facilitates higher communication between donors and youngsters. “Sadly, what has shocked me probably the most about this sickness is the stunning 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 of a ‘black’ illness, there isn’t as a lot analysis and funding allotted in 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 Discuss at Unity Park in Greenville, South Carolina,” he shares.
As a part of its work, The LucStrong Basis offers grants to households with youngsters who’re going via the advanced bone marrow transplant course of. “As you’ll be able to think about, the monetary burden that these households endure is extremely vital and cumbersome,” says Slajchert. “Due to this fact, this help offers a much-needed beam of assist for these most in want. The perfect half is that households can use this grant nevertheless they deem most crucial—no questions requested. They might use it to assist with unexpected further medical prices, grocery payments, or we’ve even seen it cowl one thing so simple as hospital parking. In actual fact, we had a household that we supported who, throughout their little one’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 capable of train and play sports activities at a excessive stage. The NFL’s Ryan Clark was recognized with SCT in 2007 whereas enjoying for the Pittsburgh Steelers after the excessive altitude skilled throughout a sport in opposition to the Denver Broncos triggered problems that later required surgical procedure. Clark managed his situation and went on to win a Tremendous Bowl with the Steelers in 2009. Then again, people with each genes, enduring Sickle Cell Illness, are at a a lot increased threat of significant problems throughout extra strenuous sports activities.
“Nonetheless, it’s in truth promising to see that analysis suggests light-to-moderate train could also be offering people with SCD some well being advantages,” says Slajchert. “Any such train may embody elevated day by day strolling or particularly tailor-made cardio periods on a stationary bike. Science has proven that this type of train helped enhance the floor space via which oxygen and vitamins may stream between blood and muscle. All of that is very promising not simply bodily for these battling SCD, however mentally as nicely.”
This September, identical to at another time of the yr, Slajchert continues to boost the attention that Sickle Cell Illness so deserves. His function on Spectrum Information 1,titled Past the Sport: JD Slajchert and the LucStrong Basis, was just lately nominated for an Emmy.
“I need to see extra people come ahead and bravely converse for these unstated thousands and thousands across the globe silently going to conflict with this sickness every 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 in opposition to this illness every second of his life, however I’d prefer to problem others to do the identical and march beside us. From there, I do know we are able to then put the strain on the powers at be to implement actual change.”
JD Slajchert will ship his TEDx Discuss 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 occasion, click on right here.
For extra info on the LucStrong Basis click on right here.
To comply with JD Slacjchert’s progress on Instagram, click on right here.