Growing up with sickle cell disease, Dr. Titilope Fasipe met very few people who had it until she moved back to Nigeria and met her teenage cousin. Her cousin seemed vibrant and healthy and full of life, which made her death at 17 — from a lung infection related to sickle cell disease — even more shocking to Fasipe. She later stumbled across a description of sickle cell disease in her mom’s nursing textbook that made her worry that she, too, could die young.
But then her father, a pastor, counseled her.
“He saw me moping around and not hanging out with people, staying indoors, and he asked me what was wrong,” Fasipe, co-director of the sickle cell program at Texas Children’s Hospital, told TODAY. “I told him about the textbook. I told him that I thought maybe God wanted me to do things with my life like grow up, get married, get a job and I don’t think that is going to happen.”
Her father responded.
“He told me that life is not determined by anything a textbook says,” she recalled. “He basically told me I shouldn’t look at life like ticking time on the clock. At the end of the day, you live life to its fullest.”
At the time, she had no idea that she would someday think back to what her father had said. As she studied medicine and grappled with having sickle cell disease, her family often motivated her.
“(After) what happened to my cousin, I became definitely interested in medicine and trying to make sure things like that do not happen to others,” she said. “I thought curing this disease was going to help a lot of people and so I started into this journey of medical school. I was a little bit clueless because I didn’t really understand all of the issues with sickle cell disease.”
From patient to doctor
Fasipe was born in Nigeria where sickle cell disease is more common than in the United States. But at the time she was born there wasn’t any infant screening for it. When she was about 1, she experienced her first bout with pain and was diagnosed with sickle cell disease. The inherited condition is found mostly in people of African descent and it causes red blood cells to develop into a sickle shape, which don’t move well, can block blood flow and lead to bouts of pain. For Fasipe, having it often meant aches in her limbs or her abdomen.
“I remember crying, writhing in bed, my mom rubbing my back and trying to comfort me and giving me medicine,” she said.
Having the condition felt isolating. One afternoon of playing could sideline her.
“I didn’t have any context of it outside of my own experience. My friends at church, my friends at school, none of them had it,” Fasipe said. “Everybody’s having fun at the pool. I’m having fun at the pool, but afterwards I’m the only one crying in pain.”
As Fasipe aged, she developed a greater understanding of the condition and when she was in college she even made some friends who had it. She started medical school, hoping that she could help people with sickle cell disease. Yet, she felt afraid to mention she had it — especially after seeing how some doctors thought so poorly of patients with it.
“When I got to the clinical years, I met my first patient with sickle cell disease and I saw how she was treated. They thought she was a drug user. They didn’t believe she was in pain — just all the stereotypes associated with sickle cell disease. That also caused me to be quiet,” she said. “I realized that for some reason sickle cell is seen as an ugly disease.”
At times, learning more about it frightened her and again she wondered if she’d share her cousin’s fate.
“I remember crying over the textbooks when I got to the sickle cell section, scared that some of those things would happen to me,” Fasipe said. “I just kept going. Maybe it was my dad’s words.”
'New story for sickle cell in America'
She felt inspired to provide patients with the best care for sickle cell disease. As a pediatric hematologist, she often treats children with cancers, such as leukemia and lymphoma. But she also cares for people with sickle cell disease and appreciates that the American Society of Hematology has made improved sickle cell care a priority.
“The conversation my parents had at that children’s hospital years ago is a completely different conversation. Now I talk about the standards of care,” she said. “This is what we’ll do to make sure we prevent as many complications as possible and we protect them.”
This helps her change the narrative of sickle cell disease passed down by generations.
“You inherit stories from families, so sickle cell has this devastating note and tone to it,” Fasipe said. “A lot of people don’t know about all the treatments and standards of care so that knowledge is something I try to infuse … You already have a different outlook because you’re not only looking at it from a negative.”
Since the 1980s changes in treatment help “prevent the worst case scenarios.”
“Death from sepsis was prevented because we now give children penicillin as a preventative medicine,” she explained. “Then we also screen them for stroke, which is, of course, just horribly devastating. It occurs in about 10% of people with sickle cell.”
People at higher risk might experience other inventions to lower their risk. New drugs have been developed to help treat the disease and bone marrow transplant can put it into remission.
“All of those things have allowed children to live to adulthood in America,” Fasipe said. “Before, the majority would die of infection. So that is the new story for sickle cell in America.”
Fasipe tries taking the advice she gives her patients with sickle cell disease, which means taking care of her health when she starts feeling overwhelmed. Meeting physicians with chronic conditions and disabilities, as well as interacting with more sickle cell patient advocates, has helped her better prioritize her health.
“I realized that I’m also not alone in this experience. I have to think about my work differently and be more proactive about how to be a good steward to my patients and colleagues, but then also make sure I am keeping myself healthy,” she said. “That’s the balance I’m learning now.”
CORRECTION (Feb. 22, 2022, 8:48 p.m., ET): An earlier version of this story referred to advances since the 1908s instead of the 1980s.