On her best days, Tatyana Thompson’s pain was at a level five. Some days, it would stay that way, a persistent throb in her joints, her hands, her back. On other days, if she was dehydrated or was hit with the sudden shock of cold weather outside, that jolt to her system would ratchet the pain up.
“It can hit you out of nowhere,” she tells TODAY.com.
Thompson was diagnosed with sickle cell disease at two months old. It’s a genetic blood disorder that changes the shape of red blood cells from round to curved, or sickle-shaped. These misshapen cells will bind to each other in the blood vessels, creating blockages that prevent oxygen from reaching tissue and organs, causing medical emergencies and frequent pain episodes. This disease meant level five pain would be Thompson’s norm for 30 years.
Becoming pregnant with her first child, however, changed things. It triggered a sickle cell crisis that trapped Thompson in excruciating level 10 pain every minute for nine months, most of which was spent in the hospital. As much as she hoped it would stop or subside once she gave birth, the level 10 pain remained.
When Thompson's husband recounted the story of their son’s first words as she lay in a hospital bed receiving pain management medication, she hit her breaking point. She’d already missed his first steps. “I’m so over it. Something has to be done. I can’t live like this,” she remembers thinking at the time. “I’m literally missing out on everything my son is doing.”
The answer to her prayers, she discovered, was in new sickle cell treatment research at the very hospital she was already in.
Until recently, “(I’d) never woken up at zero pain level,” Thompson says. Until recently, she also didn’t have a treatment option that would give her a life without sickle cell and a 94% survival rate.
Just months after she swore she’d never miss another one of her son’s milestones, Thompson was cured.
Sickle Cell's History
Like most people with sickle cell, Thompson is Black. More than 90% of the estimated 100,000 people with sickle cell in the U.S. are non-Hispanic Black or African American, according to the U.S. Centers for Disease Control and Prevention.
Of every Black or African American child born in the United States, 1 in 13 inherits the sickle cell trait from one parent, meaning they likely won’t experience signs of the disease but could pass it down to their kids; 1 in 365 is born with sickle cell.
Sickle cell disease leads to shortened lifespan, pain, risk of stroke and organ damage, vision problems, swelling and infections.
In 1983, 8-year-old Kimberlin Wilson-George became the first person cured of sickle cell with a bone marrow transplant. It remains the only curative option, but it’s historically required patients and donors to meet rigid criteria: the patient must be able to withstand intense chemotherapy, patients under 16 years old are often preferred since complications of sickle cell typically worsen with age, and the ideal donor is a sibling with a perfect bone marrow match.
Fewer than one-quarter of those with sickle cell have a matched sibling, the American Society of Hematology reports.
Antibiotics, Pain Killers and Chemotherapy
The only person in her family to inherit the disease, Thompson leaned on her loved ones to administer 5 milligrams of Oxycodone every four hours, most days. When the pain persisted, she’d take Tylenol or Motrin. When that didn’t work, she knew she was having a sickle cell crisis and needed hospitalization. A regular in the ambulance, Thompson grew familiar with the paramedics who’d ride with her.
“So, for me, it felt like a lot of sharp pain,” says Thompson. It wasn’t like a prick from a needle, but a slash from something wider, a knife or a shard of glass. “(It) can happen anywhere throughout your body … toes, fingers. I’ve had pain in my ears … A lot of the pain for me always happened in my arms, and my back, and my hips, my knees. Knees was a big one, to the point where I couldn’t even get out of bed.”
In addition to the painkillers, Thompson received hydroxyurea at the hospital, a type of chemotherapy that makes the red blood cells more flexible, according to the Mayo Clinic.
Prone to infection, she often took antibiotics to treat urinary tract infections, which would exacerbate her sickle cell symptoms. And regular blood transfusions restored her red blood cell count, allowing oxygen to flow to her tissues and organs.
When Thompson wrote a research paper about the first successful bone marrow transplant to treat sickle cell in middle school, she thought she’d found a way out. “I remember asking (my doctors) if that was possible for me, and I was always told ‘no.’” Her complications weren’t life-threatening enough, and resources were reserved for those patients. She never looked for a full bone marrow match.
Thompson’s brother, however, was a partial match. Recent research at Johns Hopkins meant that was all she needed.
A New Path Forward
Lying in her hospital bed at Johns Hopkins, Thompson read about haploidentical bone marrow transplants, or half-match transplants, which used bone marrow from donors who are only a 50% genetic match to the patient. At 30 years old, she no longer needed a full-match donor, and she was finally “sick enough” to qualify for a transplant.
“I just remember looking over at my mom, and I said, ‘I want to do that. I don’t care if it’s going to be successful or not, I have to try,’” Thompson recalls.
Thompson would use her younger brother, Dakota’s, bone marrow.
Following a dayslong conditioning regimen that suppresses the immune system, readying it to accept the foreign cells from the transplant and keep donor cells from attacking the host’s cells, Thompson went in for her procedure on July 23, 2024.
The relatively painless procedure using a low-dose chemotherapy would take only one to two hours. “We take about a liter (to a) liter and a half of bone marrow, and it’s given to the patient, like a blood transfusion,” Dr. Robert A. Brodsky, director of hematology at Johns Hopkins and Thompson’s doctor, tells TODAY.com. “There’s no … cutting or stitches or anything like that.”
In a hospital room her mother decorated for her, Thompson, her brother, her mother and her husband watched as the bone marrow moved from a bag hanging nearby and into her catheter. Thompson went home that same day.
Life Without Disease
A January 2026 study published by Brodsky and fellow researchers found that their bone marrow transplant process, developed at Johns Hopkins, has an overall 94% disease-free survival rate.
The once-tough barrier to curative treatment is toppling. Because nearly everyone can find a partial match donor, “(a cure is now) available to the majority, almost the entirety, of sickle cell patients,” says Brodsky.
Their study findings also concluded that this treatment can better preserve fertility, something that’s typically at risk with other sickle cell therapies. Patients only require six months of immunosuppression following the transplant, compared to a year with other therapies, and patients’ hospital stays were significantly shortened.
Thompson had fully weaned off the pain medication on which she was once dependent by Jan. 12, 2025, her birthday.
“That weekend, we celebrated by going to Great Wolf Lodge with my son,” Thompson recalls. The water temperatures would have previously triggered a pain crisis. “I just remember going down those water slides and literally having the time of my life because I knew I wasn’t going to the hospital the next day.”
At one point, Thompson and her husband snuck away from Thompson’s mom, brother and son, to ride the slides on their own. “(We) just kept going down the slides, going down the slides, going down the slides.”
