Revée Agyepong, a 26-year-old woman from Edmonton in Canada, is believed to be one of the first adults to be successfully treated for sickle-cell disease with transplanted stem cells. She underwent the procedure towards the end of last year with donor stem cells from her sister. Diagnosed with the disease as a toddler, she has never known life without it. “I remember as far back as elementary feeling sickle cell complications and not knowing what it was,” she said.
“I thought that everyone would go out for recess and play, then come back with a terrible headache and body pain, couldn’t breathe … eventually, I realized it was just me.”
Sickle-cell is an inherited genetic disorder in which blood cells change into a semi-circular sickle shape and block blood vessels. Symptoms include acute joint and bone pain, irregular heartbeat, kidney stones and shortness of breath. Two years ago, Agyepong heard about a successful stem cell treatment in pediatric patients but was devastated to be told she was too old for the procedure. Meanwhile, she had her gallbladder removed and her spleen no longer functioned.
Agyepong was on several medications, and received a red blood cell exchange every eight weeks but still ended up in the emergency department numerous times in the seven months leading up to her transplant.
Agyepong’s older sister, Stephanie Amoah, could no longer watch her sibling suffer and began researching stem cell treatments for adults. She approached Dr. Andrew Daly who leads Alberta’s bone marrow transplant program and told them of the pediatric trials being conducted on the east coast of the United States. Dr. Daly had coincidentally been thinking about conducting adult stem cell transplants for sickle cell disease.
Stephanie Amoah was tested and was found to be a 100% match for her sister. The transplant, which took place at Calgary’s Tom Baker Cancer Centre, involved Agyepong taking drugs to suppress her immune system and taking a course of low-dose radiation. Amoah also underwent a process called apheresis that collected her sickle-cell-free stem cells, which were given to Agyepong.
“Over the past few months, what we’ve seen is that Revée’s sister’s bone marrow has taken over the production of Revée’s red blood cells,” Daly said. “The amount of sickle cell hemoglobin in her bloodstream has decreased almost to zero.”
Today, Agyepong’s blood tests show no signs of the disease, which makes her essentially cured. “It’s phenomenal. I’m just so happy to have been part of a process that will give her a new life, a new hope and be able to do the things she’s always wanted to do,” Amoah said.
Agyepong is still recovering from the transplant but she plans to dedicate her time in the near future to advocating for the disease, and just live her life like a normal person. “I want to travel somewhere exotic and somewhere warm and feel dehydration like anyone else would because I couldn’t with sickle cell, I would be dehydrated and end up in the hospital,” she said.