Doctor with sickle cell anemia tells new story of diagnosis and treatment

Growing up with sickle cell disease, Dr Titilope Fasipe met very few sufferers until she returned to Nigeria and met her teenage cousin. His cousin seemed vibrant, healthy and full of life, which made her death at 17 – from a sickle cell-related lung infection – even more shocking to Fasipe. Later, she came across a description of sickle cell disease in her mother’s nursing manual that made her fear that she, too, could die young.

But then her father, a pastor, advised 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 manual. 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 will happen.

Her father answered.

“He told me that life is not determined by what a textbook says,” she recalls. “He basically told me that I shouldn’t view life as a stopwatch. In the end, you live your life to the fullest.

Dr. Titilope Fasipe has sickle cell disease and now treats her like a doctor. She is able to offer her patients a variety of treatments that were not available at the time of diagnosis.Courtesy of Dr Titilope Fasipe

At the time, she had no idea she would ever think back to what her father had said. As she studied medicine and battled sickle cell disease, her family often provided her with motivation.

“(After) what happened to my cousin, I definitely got into medicine and tried to make sure things like this didn’t happen to other people,” she said. “I thought curing this disease was going to help a lot of people and so I started this medical school journey. I was a bit distraught because I didn’t really understand all 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 was no screening for infants. Around the age of one, she experienced her first bout of pain and was diagnosed with sickle cell disease. The inherited condition is mainly found in people of African descent and causes the formation of sickle-shaped red blood cells, which do not move well, can block blood flow and lead to bouts of pain. For Fasipe, this often meant pain in his limbs or abdomen.

“I remember crying, writhing in bed, my mother rubbing my back and trying to comfort me and give me medicine,” she said.

Having the condition felt isolating. An afternoon of play could put her on the sidelines.

“I had no context for it outside of my own experience. My friends at church, my friends at school, none of them had it,” Fasipe said. “Everyone has fun at the pool. I have fun at the pool, but afterwards I’m the only one crying in pain.

While new treatments have had a positive impact on the lives of Americans with sickle cell disease, Dr. Titilope Fasipe hopes these treatments can help people living in other countries, such as Nigeria, which has one of the world’s largest populations. higher numbers of people with the disease.Courtesy of Dr Titilope Fasipe

As she got older, Fasipe developed a better understanding of the disease and when she was at university, she even made friends who suffered from it. She started medical school, hoping she could help people with sickle cell disease. Still, she was afraid to mention she had it — especially after seeing how some doctors thought so poorly of patients who had it.

“When I got to the clinical years, I met my first patient with sickle cell disease and saw how she was treated. They thought she was a drug addict. They didn’t believe she was suffering – just all the stereotypes associated with sickle cell disease. It also forced me to shut up,” she said. “I realized that for some reason sickle cell disease is considered a nasty disease.”

Sometimes knowing more about it frightened her and again she wondered if she would share her cousin’s fate.

“I remember crying over the textbooks when I arrived at the sickle cell section, scared that some of these things would happen to me,” Fasipe said. “I just carried on. Maybe it was my dad’s words.

“New History for Sickle Cell Disease 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 improving sickle cell care a priority.

“The conversation my parents had at that children’s hospital years ago is a completely different conversation. Now I’m talking about standards of care,” she said. “That’s what we’ll do to make sure we prevent as many complications as possible and protect them.”

When Dr. Titilope Fasipe was growing up, she felt isolated because she didn’t know many people with sickle cell disease. Patient advocacy groups have grown, making it easier for sufferers to connect with others.Courtesy of Texas Children’s Hospital

This helps her change the narrative of sickle cell disease being passed down from generation to generation.

“You inherit stories from families, so sickle cell disease has that devastating note and tone,” Fasipe said. “A lot of people don’t know all the treatments and standards of care, so that knowledge is something I try to infuse…You already have a different view because you’re not just looking at it from one point from a negative point of view.”

Since the 1908s, treatment changes have helped “prevent worst-case scenarios”.

“Death from sepsis was averted because we now give children penicillin as a preventive medicine,” she explained. “Then we also screen them for strokes, which is, of course, just horribly devastating. It occurs in about 10% of people with sickle cell disease.

Those at higher risk might experiment with other inventions to reduce their risk. New drugs have been developed to help treat the disease, and bone marrow transplantation can put it into remission.

“All of these things have made it possible for children to live to adulthood in America,” Fasipe said. “Before, the majority would die of infection. So this is the new story of sickle cell disease in America.

Learning to balance a busy professional life with a disease like sickle cell disease can seem difficult, but Dr. Titilope Fasipe often thinks about what she says to her patients and tries to follow her own medical advice.Courtesy of Dr Titilope Fasipe

Fasipe tries to follow the advice she gives to her sickle cell patients, which is to take care of her health when she starts to feel overwhelmed. Meeting doctors with chronic illnesses and disabilities, as well as interacting with more sickle cell patient advocates, has helped her better prioritize her health.

“I realized that I was not alone in this experience either. I need to think about my job differently and be more proactive about being a good steward for my patients and colleagues, but also making sure I stay healthy,” she said. “It’s the balance I’m learning now.”

About Hector Hedgepeth

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