The first thing Vanessa Finch wanted after her son died was simple: to continue to hear his name.
Kahleeb Beckett, affectionately called Leebo, lived with sickle cell disease, genotype SS, for 23 years. As a concerned mother, Finch spent much of those years learning how to navigate a health care system that she found did not always listen.
“Health care is a business, but for us, it is deeply personal,” she said. Having a chronically ill population from which billions are made, yet the treatment is unequal, means that those of us from within have to rise up to fight for better.”
The Centers for Disease Control and Prevention (CDC) describes sickle cell disease (SCD) as an inherited blood disorder that causes the bone marrow to produce abnormal hemoglobin (blood cells). These abnormal blood cells are inflexible and are poor carriers of oxygen throughout the body, resulting in complications such as excruciating pain, chronic anemia, organ failure, and shortened lifespan.
Understanding the devastating complications of the disease firsthand, Finch— fueled by her grief for her son, who died in 2021— founded Leebo’s Sickle Cell Support Group in 2023. A national platform for education and advocacy, the nonprofit represents a broader shift in which patients, parents, and caregivers are no longer content to solely be the people discussed in medical offices, research meetings, and policy rooms.
They are stepping up to lead the discussions themselves.
“The new generation is adept at research; they were born with it at their fingertips. They question. We didn’t,” Finch, 56, explained. “However, our generation has lived experience, wisdom, honed instinct. Collectively, we are learning how to combine both approaches, and the result is a game changer.”
The Miseducated Become the Educators
For a community that has spent generations being told what to believe about its own disease, educating themselves is becoming a form of power.
Dr. Shanetta Richardson, 47, president of the Sickle Cell Association of the National Capital Area (SCANCA), believes those living with SCD must be at the center of their own education because no medical journal can fully capture the reality of living inside the disease.
“It is important that we are now doing the teaching and advocating because we are living with it every day, learning quickly, and adapting,” Richardson said. “It is very difficult for people, even medical personnel, to understand and speak to the unique experience of our entire population.”
Those with sickle cell disease can experience vastly different symptoms, complications, and responses to treatment. Richardson learned early that navigating those differences required more than simply following a long series of medical instructions.
“Spending so much time in a hospital system and noticing those who couldn’t advocate for themselves taught me early the power of one’s voice,” she said.
That voice, she said, is growing louder at a moment when medical possibilities for sickle cell treatment are changing, too. Although there is no universal cure for sickle cell disease, curative and transformative therapies have introduced possibilities that previous generations were unable to even imagine.
“At every appointment, sickle cell warriors used to be given a death sentence,” Richardson said. “Now, curative and transformative therapies are becoming part of the discussion.”
For Richardson, the new conversation around treatment for sickle cell disease demands a new mindset: more education, more empathy, more resources and less judgment.
“Now there is hope,” she continued, “and it is our responsibility to take that hope and build a future for ourselves that no one expected us to live long enough to realize.”
From Fragmented Voices to Collective Power
For all the progress being made, advocates say the sickle cell community still faces a fundamental obstacle: it has not always been organized into a single powerful voice.
DeMitrious Wyant, 39, activist, believes that years of limited resources and fragmented efforts have made it harder for the public to see the people behind the disease.
“To a degree, we have been divided,” said the executive director of The Rare Care Foundation. “We form mini entities that do similar things, so instead of major financing as a unit 50- to a 100,000-strong, we have historically competed for the same resources but in much smaller groups.”
Wyant believes sickle cell advocates must also begin presenting the public with something more impactful than individual organizations: the human beings whose lives are shaped by the disease.
“When people see sickle cell disease, they see an organization,” he said. “The people suffering from the disease are rarely shown.”
Wyant, who lives with sickle cell disease, believes that fragmentation must give way to collective action, particularly for a population that has historically been expected to accept less.
“When you see cancer, you see people, families, love, stories of courage, the tragedy of loss. That human understanding builds connection, draws people to rally for a cause,” he explained. “Sickle cell disease has never been positioned in this light, because we, as one powerful collective, have never created it.”
Richardson also emphasized the importance of increasing visibility for those suffering from sickle cell disease.
“Empathy starts when people understand and can relate their struggle to yours,” she said. “It is impossible to empathize with a disease whose suffering remains unseen.”
For Finch, a mother still early in grief from the loss of a son, sharing the faces, the names, and the stories of those now suffering, and those lost to sickle cell disease has now become her life’s mission.
“We have lost too many too early to sickle cell disease,” she said. “We owe it to them to work together to ensure that fewer families continue to suffer such unimaginable loss.”
As she works to encourage others to join in her advocacy, Finch offered a direct charge: “It’s time that the cure starts from within.”
This reporter has genotype SS, the most aggressive form of sickle cell disease. She lectures and advocates nationally for the inclusion of mental health support and holistic and alternative medicine as treatment for those with chronic illnesses.
