The sickle cell disease has plagued Black people for decades. However, with a new advancement in technology, people living with the disease have been given another chance.
After reading an article about a new clinical trial using gene editing to help treat those living with sickle cell, Jimi Olaghere immediately contacted the medical team in charge. After just a month, he and his wife Amanda took a trek to Nashville, Tennessee’s Sarah Cannon Research Institute to see if he qualified.
He recalls learning the news that he did indeed qualify and called it “the best Christmas present ever.” As someone who’s lived with the disease since his childhood, Olaghere has had to face the challenges that come with sickle cell for his entire life.
“You always have to be in a war mindset, knowing that your days are going to be filled with challenges,” he expressed.
Living With Sickle Cell
The hereditary disease runs rampant among families and is caused when a genetic mutation makes the body produce abnormal haemoglobin, a protein packed into red blood cells, distributing oxygen throughout the body.
“This is the protein that is packed into red blood cells and carries oxygen around the body. Red blood cells are normally round and squishy, but mutated haemoglobin can make them rigid and take on their characteristic sickle shape,” BBC reports. “These sickled cells struggle to navigate the body’s blood vessels and get stuck, leading to blockages that stop flow of blood.”
People living with sickle cell are at a higher risk of heart attack, stroke, and even organ damage. Olaghere also notes the amount of pain he’s endured living with the disease.
“You wake up in the morning with pain and you go to bed with pain,” he continued.
Olaghere has had countless hospital visits, often monthly, to treat his symptoms with morphine. Not only has he had to live in and out of hospitals, but he also had to relocate to a warmer climate, from New Jersey to Atlanta, since cold weather causes the blood vessels near the skin to narrow, increasing the risk of blockages.
A New Life
Thanks to the clinical trial, which used gene editing, scientists were able to genetically engineer his body to no longer produce abnormal haemoglobin.
“It’s like being born again,” he said, according to BBC. “When I look back, it’s like, ‘Wow, I can’t believe I lived with that.”
In Olaghere’s case, the scientists were able to trick genetics that essentially turned back the hands of time within his blood.
“Our approach is to turn that switch off and increase the production of foetal haemoglobin again, basically turning the clock back,” said Dr. Haydar Frangoul, the doctor who performed his treatment at Sarah Cannon Research Institute.
After Olaghere’s stem cells were sent to Vertex Pharmaceuticals’ laboratory, where the genetic editing took place in September 2020, the engineered cells were placed back into his body.
“It was a week of my birthday, actually,” said Olgahere. “So it was almost like getting a new life.”
Now, technology has single-handedly changed the course of Olaghere’s life forever.