Sickle Cell awareness: Progress happening at Texas Children’s Hospital

Here's what we know

HOUSTON – According to the Houston Health Department, Houston has the most sickle cell of all the regions in Texas.

There is a diverse population which may be one reason why it is more common here, and we know people of African descent are most commonly affected by sickle cell disease.

Texas Children’s Hospital (TCH) said about 10% of its patients are Latino.

The disease is an inherited disorder of the blood, Dr. Venée Tubman, Co-director TCH Sickle Cell Disease and Thalassemia Program, said that means it can cause problems anywhere blood can go.

“The disease can sort of slowly attack multiple organs over time, so we know that the average life expectancy for persons with sickle cell disease is about 20 years shorter than for the average American,” said Dr. Tubman. “In places where we aren’t able to make the diagnosis of sickle cell disease early, the average life expectancy is about five years of age.”

In America, every child is tested for the disease at birth.

Dr. Titilope Fasipe, Co-director TCH Sickle Cell Disease and Thalassemia Program, is deeply motivated to give hope to families and is walking proof that modern medicine can improve outcomes.

“I had a cousin growing up who had sickle cell disease, and I was actually born with sickle cell disease, and when she was a teenager, my cousin, she ended up passing away, and at that moment, I realized that there was so much to be done,” Dr. Fasipe said. “I told myself, ‘I want to enter medicine to figure out how do we keep stories like hers from happening?’”

There are only four drugs available for sickle cell, said Dr. Fasipe, which is frustrating for TCH researchers since other chronic diseases have a lot more options.

“You would never just see four drugs, you see hundreds of drugs. So, we have several researchers working on ways to get more of those types of drugs,” Dr. Fasipe said.

How could someone be cured?

Some people do well with bone marrow transplants, but not everyone has a donor.

Earlier this year, Katy teen Helen Nduku became the first person to officially be cured with her own stem cells in a gene cell therapy trial. TCH said she continues to do well.

TCH said most kids who get sickle cell in Texas come here for treatment. About 96% of children will survive into adulthood.

“Some children you would not know anything is wrong with them because they’re so healthy and well taken care of and that is what I want for everybody, every child,” said Dr. Fasipe.