Clifton Kirkman II moves through life with an invisible weight on his shoulders — and in his blood. A Detroit-based father, journalist, and patient advocate, Clifton has lived with sickle cell disease (SCD), a genetic blood disorder that causes chronic pain and organ damage, for 38 years. Yet when asked what defines him, he doesn’t start with illness. He starts with love.
“I’m a father first,” he says. “My 11-year-old daughter, Crystal, is my pride and joy. She didn’t ask to be here. Life happens, but I owe her my best — even on my worst days.” Across the U.S., sickle cell disease disproportionately affects Black communities. But Black men living with SCD often face a double burden: the pain of a chronic, life-threatening illness and the pressure to perform traditional roles of masculinity — protector, provider, leader. For Kirkman, the toll is both physical and emotional.
He’s undergone monthly blood transfusions since age 10, experienced a childhood stroke, and faced countless hospitalizations. Yet his biggest challenge? Showing up as a father when his body is breaking down. “There’ve been times I’ve been in crisis — can’t walk stairs, high on pain medications — and my daughter asks, ‘Daddy, what do you need?’” Kirkman says. “She’s become my little helper. It breaks me because I know that it should be the other way around.” His daughter increasingly gets worried when he travels for advocacy work. “She said to me, ‘Dad, I’m scared when you’re gone.’ That shook me to my core. It reminded me of how I felt about my own father, who passed away from sarcoidosis and epilepsy. That fear of loss — it’s become a constant companion.”
This emotional inversion — where children begin to carry the burden of care — is a reality many Black fathers with SCD quietly face. They push through not just to survive, but to create joy and stability for their families. “I show up for every recital, every assembly, every moment I can,” Kirkman says. “Because when I’m gone — and I know the odds — I want my daughter to remember life, not just loss.” But fatherhood is only part of the story. The broader reality for Black men living with SCD in America is far more complex. As Kirkman explains, “Society tells us we’re supposed to be strong, always working, never vulnerable. But when your body won’t cooperate, it can crush your spirit.”
Maurice Dortch, 43, from Detroit, Michigan, shares that same struggle. Forced into disability, he wrestled with shame and guilt. “I can’t work, and bills don’t care if you’re sick,” Dortch says. “That pressure has reinforced the idea that fatherhood may not be for me. I would never want my child to suffer because of my chronic illness.” Braden Green, 19, from Columbia, South Carolina, fears how employers will view his condition. “Even when I’m not in pain, I’m thinking about the next crisis. I wonder — will they fire me if I’m hospitalized? Will they even believe me?”
In hospitals, where empathy should prevail, these men face yet another battle: disbelief. “I’ve seen people die not from the disease itself, but from how they were treated in places where they should feel safe — hospitals,” says Dortch. “Labeled as drug-seekers instead of patients.” Green shares, “When I go to the ER, I’m not just scared of the pain. I’m scared of how they’ll treat me. Will they help me? Or will they look at me like I’m faking it?” This mistrust — rooted in racism and systemic neglect — discourages many from seeking care or trying new treatments, despite recent medical advancements in sickle cell disease. “It’s not that we don’t want relief,” Kirkman says. “We just don’t trust the system offering it.” The mental toll of living with SCD — compounded by racial and gender expectations — is relentless. “Sickle cell tests your mental health daily,” Dortch says. “It’s not just physical pain. It’s the stress, the fear, the judgment.”
And yet, these men continue to fight. For dignity. For family. For visibility. Kirkman, Dortch, and Green have each transformed their pain into purpose. Through public speaking, fraternity events, school visits, and community outreach, they’re changing how people understand SCD. “I want people to see us beyond the disease,” Dortch says. “We’re not weak. We’re warriors.” Green echoes this sentiment: “I talk about my experience so that other young men with SCD know they’re not alone. We go through more than most people realize. Awareness is everything.” For Clifton, advocacy is about legacy. His daughter, Crystal, is already stepping into her own power, educating classmates about SCD and showing a level of compassion that gives him hope. “I want her to see me not as a victim, but as someone who chose love and purpose, even through pain.”
Sickle cell disease is more than a medical condition. It’s a lived experience shaped by racism, bias, and erasure. The stories of these Black men demand a national reckoning — one that reimagines care, challenges stereotypes, and centers humanity. Healthcare providers must do better. Employers must show compassion. Society must listen. These men are not statistics. They are fathers, sons, leaders, thinkers, and survivors. Their stories aren’t about pity — they’re about power. They reveal the quiet strength required to live, to lead, and to love in the face of invisible, relentless pain. As Green says, “I’m proud of who I am, even if this disease makes it harder. I’m still here. I’m still fighting.” And as Dortch puts it: “Born with it. Die with it. But not without making some noise along the way.”