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Patients and Outcomes

+ Utilization & Outcomes
+ Patients' Stories
   - Keone Penn
   - Gayle Serls
   - Katherine Marguerite Sutter
   - Robert Lopez-Lengowski
   - Mitch Santana
   - Stephen R. Sprague
   - Spencer Barsh
   - Jacyln Albanese
   - Anthony Dones
   - Heidi Tweten
   - Erik Haines


Keone Penn wrote in 2006

Born with severe sickle cell anemia (a disease that afflicts more than 70,000 Americans and a disproportionate number of African- Americans), Keone Penn suffered a stroke at age five and endured frequent episodes of pain throughout his childhood. He received regular blood transfusions through a chest catheter for his anemia, to reduce the sickling of his red blood cells and control his pain. But Keone continued to have pain crises, bone and joint crises and developed kidney complications.

Keone's doctors began considering a stem cell transplant as a last resort. Keone's sister, a possible bone marrow donor, failed to match and no unrelated bone marrow donor match was found. Keone's doctor, Andrew Yaeger (now at the University of Pittsburgh), decided to try transplantation with cord blood from an unrelated donor, the first time this had been tried for sickle cell disease.

At Egleston Children's Hospital (now the AFLAC Cancer Center of Children's Healthcare of Atlanta), Keone underwent nine days of chemotherapy to eliminate his own defective bone marrow cells. On December 11, 1998, Keone's doctor transplanted Keone with a matching cord blood unit that had been previously donated to the New York Blood Center's National Cord Blood Program. His recovery was long and, at times, extremely difficult. He was readmitted to the hospital several times, and nine months after the transplant he developed graft vs. host disease (GvHD) as his newly transplanted cells began to attack his own body.

Eventually, these complications subsided. Keone's new stem cells now produce normal red blood cells with normal hemoglobin. The swelling in his joints has subsided and Keone has not had any further pain crisis. On the one-year anniversary of his transplant, Keone's doctor pronounced him cured. Keone will be celebrating his eight year post-transplant anniversary in December, 2006. He graduated from high school in 2004 and plans to train as a chef in culinary school.

"I want to hug the man who thought of it," Keone told an Atlanta Journal-Constitution reporter before a banquet honoring cord blood transplant survivors held in 2003. "I just want to give him a big hug and break his ribs and squeeze him so tight." [See "the hug" in How to Help]

Read the December, 1999 TIME Magazine article:

Note: Unrelated hematopoietic stem cell transplantation is not suitable for all Sickle Cell patients and may be used for certain patients with severe Sickle Cell Disease.


Keone Penn with his mother, Leslie

The first patient to receive a cord blood transplant from an unrelated donor for sickle cell disease was Keone Penn (pictured here with his mother, Leslie). He had suffered a stroke at age five and endured episodes of excruciating pain and twice-monthly blood transfusions through a chest catheter before undergoing his cord blood transplant. A year after his transplant, Keone was declared cured of his sickle cell disease.