Phillip A Doerfler, PhD Associated Investigator, Versiti Hematopoiesis and Immunology (Photo/Versiti)
By Karen Stokes
September is Sickle Cell Awareness Month, and James Griffin has experienced firsthand the challenges of living with Sickle Cell Disease (SCD).
Diagnosed at age 2, Griffin endured severe pain, infections, surgeries, and countless hospitalizations during his childhood—often spending birthdays and holidays in a hospital bed.
Sickle Cell Disease is an inherited condition that affects about 1 in 400 African American births. It is caused by an abnormal type of hemoglobin that produces red blood cells with a “sickle” shape instead of the normal round disc. These sickle cells carry less oxygen, block blood flow, and can cause organ and tissue damage.
Now 44, Griffin works as a medical assistant at Children’s Hospital. He describes the pain as “a jackhammer going through my body” and recalls times when medical staff dismissed his suffering.
“Sickle cell patients rely on emergency care, often after hours or on weekends,” he said. “In emergency rooms, there have been times when there was less compassion toward us. Because treatment requires opioids or morphine, nurses sometimes assume we’re ‘drug seekers’ and make us wait longer, believing we’re exaggerating the pain.”
Today, Griffin receives most of his care at a dedicated Sickle Cell clinic, which has been a vital support in his journey. He also takes Hydroxyurea, a therapy that raises fetal hemoglobin levels to prevent chest crises and improve oxygen delivery.
James Griffin, patient living with Sickle Cell (Photo/Versiti)
Dr. Phillip Doerfler, who joined Versiti in 2024, studies genetic tools to determine which patients respond best to Hydroxyurea and other therapies. His team is investigating the genetic “switch” that regulates fetal hemoglobin production, with the goal of reactivating it to reduce the effects of SCD. This research could offer new hope for patients who lack a bone marrow donor match.
Along with medical treaments, Griffin manages his health through exercise, walking, healthy eating, and staying warm in cold weather. While he doesn’t experience daily pain, crises can strike without warning. “The biggest challenge with sickle cell is its unpredictability,” he said.
His advice to others: “Listen to your body and know when to rest. Fatigue can trigger a crisis. Drink plenty of water—it keeps you hydrated and helps with blood flow. I carry a water bottle everywhere I go.”
Sickle Cell Disease (SCD) affects more than 100,000 Americans. Many patients require blood transfusions every 3-4 weeks just to survive. There are 411 known sickle cell patients in the Greater Milwaukee area.
Donations for research and blood donor registration will have a profound effect on individuals living with sickle cell.
According to Versiti, Ro blood—a rare type most common among people of African and Caribbean ancestry—is especially important for SCD patients. It significantly reduces the risk of strokes, chronic pain, and organ damage. However, only 4% of donors carry this blood type, making it especially valuable.
Dr. Doerfler is optimistic about the future of SCD care. “We’ve made exceptional progress with awareness, education, and research,” he said. “We now have the tools to generate truly personalized information on a patient-by-patient basis. That’s what I’m working on here, and that’s what I’m trying to do, working with the Medical College of Wisconsin pediatric Sickle Cell Clinic. In 5–10 years, treatment will only get better. The future is brighter than it’s ever been for people living with Sickle Cell Disease.”