For most people, red blood cells are silent workers, carrying oxygen throughout the body without notice. But for people with sickle cell disease, those same cells can turn hard and sickle-shaped, clogging blood vessels, triggering waves of pain, and slowly damaging organs.
Sickle cell disease is inherited, passed through genes from both parents. About one in 13 African Americans is born with the sickle cell trait. In Wisconsin, most patients live in the southeastern corner of the state, and Milwaukee is home to many of them.
Living with sickle cell means dealing with severe pain, fatigue, shortness of breath and unpredictable flare-ups that can send patients to the hospital for days. For decades, treatments focused only on easing symptoms. Now, new research is offering hope for longer lives and possible cures.
Milwaukee’s Versiti Blood Research Institute has become one of the nation’s leading centers for blood-science innovation. Inside its labs, scientists test new therapies and explore long-term solutions. Outside those walls, patients like James Griffin are living the daily realities of the disease, waiting for those scientific breakthroughs to reach them.
The Patient, James Griffin: Growing Up with Pain
Photo Courtesy of Versiti
James Griffin
At 44, James Griffin has lived with sickle cell disease for as long as he can remember. “I’ve had about a hundred blood transfusions since I was six years old,” he told me, his voice calm, not dramatic, just stating the facts of his life.
He grew up near Sherman Park on Milwaukee’s North Side, the son of a welder and a preschool teacher. “I had loving parents,” he said. “When I got diagnosed with sickle cell as an infant, my mom spent a lot of time with me.”
That diagnosis came after a terrifying episode when he was two years old. His hand had swollen, and the pain was so sharp that his mother rushed him to the hospital. Blood tests confirmed sickle cell disease. “My parents were shocked,” he told me. “They didn’t know they both carried the trait. Neither my brother or two sisters got it.”
From then on, childhood meant a steady rhythm of medications, hospital visits, and careful monitoring. “If I ran too much, I’d feel a sharp pain,” he recalled. “The nurses would have to hold me down to give me morphine. I’d be in the hospital about once a month, sometimes for a week at a time.”
|
|
His mother stayed by his side. “She taught me to value people,” he said. “To always extend kindness.”
High School Challenges
At West Allis Central High School, Griffin tried to keep his condition private. “My eyes were yellow, and kids would ask about them,” he said. “I felt ashamed. I didn’t talk about it. And I couldn’t play sports.”
Still, he found ways to keep moving forward. He studied printing and publishing at Milwaukee Area Technical College, took summer jobs at grocery stores and retail shops, and tried to live as normally as possible. But even simple tasks could be draining. “Those jobs were hard,” he says. “Too much bending, and difficulty running the printing press.”
At 26, he moved into his own apartment. “I stopped hiding my disease,” he says. “My dad told everyone. He wanted people to accept me.”
By his late twenties, he had fallen in love. “I told my girlfriend about my sickle cell,” he says, “but she didn’t really understand until she saw me in the hospital getting a transfusion.” The partnership lasted six years, and two years of marriage. “It didn’t work out,” he said, “but we’re still friends.”
Blood as Lifeline
For Griffin, blood transfusions are both treatment and rescue. The sickle cells in his body cannot carry enough oxygen, leaving him weak and short of breath. “Whenever my blood levels drop, and I’m in pain, I go to Froedtert Hospital,” he said. “After a transfusion, I feel stronger. I can walk down the hallway again.”
He’s had roughly a hundred transfusions over his lifetime. “I’m so grateful for blood donors,” he said. “They’re my superheroes.”
Matching blood is critical. The rare Ro blood type, best suited for sickle cell patients, is carried by only about four percent of people. The average sickle cell patient needs 60 units of blood a year, and some require transfusions every few weeks. Every donation matters.
Turning Experience into Purpose
After years of being on the receiving end of care, Griffin decided to join the medical field himself. He earned a degree as a medical assistant and has worked for seven years at Children’s Wisconsin, giving vaccinations, taking vital signs, and recording patient histories.
“I try to operate out of love and empathy,” he explained. “I know what it feels like to be on the other side.”
He’s also become a public voice for people living with sickle cell disease. His book, Breaking Silence: Living with Sickle Cell Anemia, tells his story in unflinching detail. Griffin now speaks at schools, conferences, and medical institutions across the country. He’s talked with the staffs of U.S. Senators Tammy Baldwin and Ron Johnson and has spoken at Harvard, Notre Dame, Marquette, North Carolina Central University and UW Oshkosh.
“My goal is to put a face to the disease instead of being just a number,” he said.
Progress and Awareness
In his 44 years, Griffin has witnessed major changes in treatment. “Therapies are improving,” he said. “But my biggest fight is getting the medical community to understand what this pain feels like.”
Many sickle cell patients face skepticism in emergency rooms when they seek opioid medications for severe pain. “The medical staff may think you’re exaggerating or drug-seeking,” Griffin said. “People don’t see how much it hurts. You’d rather be anywhere else than in that hospital bed.”
Researchers at Versiti are developing genetic and cell-based therapies that could change that reality. “It gives me hope,” he said. “I’ve seen how far we’ve come.”
A Measured, Hopeful Life
These days, Griffin leads a disciplined, steady life. “I start my morning with a mile-and-a-half walk at eight,” he told me. “Then breakfast and work.” On days off, he reads, listens to music, and watches sports. “I’m a big Packers fan,” he said with a smile.
He likes shooting pool, spending time with friends, and being outdoors. When pain flares, he slows down. “I’ll just rest, watch TV, eat healthy,” he said. “I don’t let a bad day define me.”
After more than four decades with sickle cell disease, James Griffin has built a life grounded in resilience, gratitude, and purpose. He’s no longer just a patient but a bridge between medicine and the people still waiting for understanding and cures.
The Scientist, Phillip Doerfler: The Long Journey to a Sickle Cell Cure
Photo Courtesy of Versiti
Dr. Phil Doerfler
When you meet Dr. Phillip Doerfler, 37, he comes across as a mix of athlete and scientist, focused and precise, the kind of person who likes figuring out how things work. That curiosity has taken him from the playing fields of Michigan to the cutting edge of genetic medicine at Milwaukee’s Versiti Blood Research Institute, where he’s part of the global race to transform sickle cell disease treatment.
“I grew up in downriver Detroit,” he told me. “Three-sport athlete, good grades. My parents moved to Florida, and I ended up at Hillsdale College on a football scholarship.” He majored in biology, minored in biochemistry, and later earned a Ph.D. in biomedical sciences at the University of Florida, focusing on gene therapy, specifically, adeno associated viruses, the delivery vehicles scientists use to fix faulty genes.
Even as a graduate student, Doerfler wanted to understand how genes turn on and off, in other words, the switches that control biological machinery. His early work focused on Pompe disease, a rare genetic disorder. After earning his doctorate, he turned his attention to blood. “I found blood development fascinating,” he said. “It’s about understanding how genes regulate the most fundamental system of life, carrying oxygen through your body.”
In 2016, that interest took him to St. Jude Children’s Research Hospital in Memphis, one of the world’s leading centers for gene therapy. There, he joined a team studying sickle cell disease, the inherited condition that causes red blood cells to harden and form a sickle shape. Those misshapen cells clog blood vessels, block oxygen, and damage organs. The result can be severe pain, strokes, and shortened lives, especially among African Americans, who are disproportionately affected.
At St. Jude, Doerfler began working on what may be the key to ending sickle cell’s grip: turning fetal hemoglobin back on. “When you’re a fetus, your body makes a special kind of hemoglobin that carries oxygen really well,” he explained. “After you’re born, that fetal gene shuts off, and the adult one turns on. The adult version is where the sickle mutation lives. But if you can flip that fetal switch back on, you can prevent sickle cell disease entirely.”
The Process of Gene Editing
That’s exactly what modern gene-editing tools like CRISPR-Cas9 are designed to do. Cas9 acts like a pair of molecular scissors, cutting DNA at a precise spot so scientists can tweak the genetic code. In Doerfler’s Versiti lab, scientists extract bone marrow from a patient, correct the sickle mutation or reactivate the fetal hemoglobin gene, and then return the modified cells through a transplant. “As long as the bone marrow transplant is successful,” he said, “that person can live without sickle cell disease.”
The process is already working in young patients, approved for children as young as twelve. “My hope,” he added, “is that one day we can treat them even earlier.”
After years of work at St Jude, Doerfler came to Milwaukee to join Versiti Blood Research Institute, where he studies blood development and gene therapy while collaborating with the Children’s Hospital sickle cell clinic. “Milwaukee has a large African American population, and there are real sickle cell patients here,” he said. “Versiti is built for this kind of research.”
He’s quick to point out that sickle cell isn’t limited to one group. “It shows up in people from the Middle East, Southeast Asia, and the Caribbean,” he said. “But in the U.S., it mostly affects African Americans because the gene variant originally evolved in parts of the world where malaria was common.”
His lab focuses on what’s known as the genetic switch, the molecular mechanism that decides whether fetal hemoglobin stays on or off. “Some people are born with natural variants that keep fetal hemoglobin turned on,” he said. “They have the sickle cell mutation, but they don’t get sick. Now we have the tools to recreate that in patients.”
That process begins with genome sequencing, reading the entire genetic code of a person’s DNA to find the differences between those who get sick and those who don’t. Once scientists locate the key region that silences fetal hemoglobin, they can target it with CRISPR gene editing. “We cut the DNA, remove the protein that keeps fetal hemoglobin off, and let the body do the rest,” he said.
The need for blood donors is constant. “There are about 400 known sickle cell patients in the greater Milwaukee area,” he said. “Each one can need more than 60 units of red blood cells every year, and the safest matches often come from donors with the rare blood type Ro.” That blood type is found in only 4 percent of the general population but yet in roughly 40 percent of Black donors. “That’s why it’s so important to have donation centers in the Black community,” he added.
While transfusions are essential, they’re ultimately a stopgap. The real goal is to replace damaged bone marrow with healthy, genetically corrected cells, a procedure that can offer what Doerfler calls functional cures. “If you replace a patient’s bone marrow with healthy marrow,” he explained, “then the patient stops making sickle-shaped cells altogether.”
Still, he avoids the word cure. “We’re giving people longer, healthier lives,” he said. “That’s transformative, but it’s not permanent. Their children might still carry the gene. So instead of calling it a cure, I call it transformative therapy.”
For more information about sickle cell disease and how to donate blood, please consult the link stopsicklecell.org
