Miracle Moment: Living with sickle cell disease

Sickle cell disease is a genetic and hereditary affliction where hemoglobin clumps together on one side of the red blood cell after releasing oxygen, causing the cell to sickle.

The pain associated with the disease is so excruciating that people claim that the experience is akin to bones breaking in their body.

A brother and sister afflicted with the disease are remarkably determined to live a full and meaningful life despite being in constant pain.

Bianca and Chris Sylfroid greet their nurse Rachel Toa like a close friend, as the nurse has taken care of the two siblings for most of their lives.

Rachel Toa, a clinical coordinator at Golisano Children’s Hospital, tracks more than 200 kids and young adults with sickle cell disease.

“When I was younger, I knew it was more of a secret thing. I wanted it to be secret because, you know, people looked at me with pity, and I didn’t like that,” said Bianca Sylfroid.

Both were born with sickle cell disease, believed to have been inherited from their parents.

“It doesn’t stay in one spot. As far as it could start in the legs, then it’ll go to your back, your chest, your arms,” said Chris Sylfroid.

The pain episodes can last for hours or even weeks, as the triggers can be attributed to just about anything.

These pain episodes would cause the two to miss out on school, with one experience being so painful that doctors had to put one of the kids into a medically induced coma.

Bianca had missed several months of school because of her medically induced coma, causing her to repeat the second grade at the time.

Now, at 24, she receives monthly blood transfusions to lower her risk for complications.

Those diagnosed with sickle cell disease are at a greater risk for serious lung conditions called acute chest syndrome, as well as organ damage and stroke.

Toa told WINK News that the disease affects around 100,000 people in the U.S., with around 90% being black.

“This disease is horrible, and these kids and adults live with pain daily,” said Toa. “They chronically have pain every day, they go to work, and they just kind of have to live with pain, and then eventually, you know, when it gets too much, then they seek out us, but every day, these people live with pain, and they’re amazing for what they go through on a daily basis.”

Inspired by Toa, both Bianca and Chris are pursuing careers in nursing.

Pediatrics for Bianca and phlebotomy for Chris.

The only known cure for sickle cell disease is stem cell or bone marrow transplants, but these aren’t done often due to their significant risk.