HOUSTON – Sickle cell disease has many different faces and affects several age groups across the United States and in the greater Houston area.
The rare genetic blood condition affects the body’s red blood cells and is passed on when a child receives two sickle cell genes, one from each parent.
It occurs more often among people from parts of the world where malaria is, or was common, and affects predominately the African American community.
Deshaun Williams, 13, is one of many young Houstonians living with the disease.
He was just recently released from the hospital after a couple of weeks of being treated for severe pain in his back and thighs.
“His pain when he got to the hospital was an eight, and it had been an eight for almost two weeks. The morphine wasn’t working at all,” said Ashely Wallace, Williams’ mother.
The condition ultimately causes organ damage, including severe episodes of pain that can last up to a week and can result in multiple hospitalizations throughout a lifetime.
As of right now, there is no single best treatment, and most times it’s just meant to manage the symptoms.
The only cure for sickle cell is a bone marrow or stem cell transplant, but they are very risky and can have serious side effects, including death.
Iyannah Mitchell, 18, was diagnosed with the disease at birth and has dealt with that pain her whole life.
“For me, it’s like a stabbing pain like all over my whole body,” Mitchell said.
It for that reason, Mitchell’s mother Brandi Lilly started her very own non-profit in September called Helping Families Fight Sickle Cell.
Lilly said the goal is to help parents struggling to keep up with medical bills and financial costs, but the goal is also to be there for the children.
“A lot of kids have been held back in school due to depression and pain,” Lilly said. “They take a lot of medication, so a lot of kids are getting hooked on medication because they start them at a young age.”
Here are the numbers, according to the Centers for Disease Control and Prevention:
- Sickle Cell Disease affects approximately 100,000 Americans
- It’s found in about 1 out of every 365 Black or African American births
- In comparison, it’s found in only 1 out of every 16,300 Hispanic-American births
Lilly told KPRC 2 that the disease is hurting and holding back the African American community in many ways, which is why she teamed up with Darrellon Prince and her nonprofit “The Pin Cushion Gang” to raise awareness.
Prince’s 21-year-old daughter Hannah also suffers from the disease and they are frustrated with the lack of attention and funding it’s received.
“It’s not only an African American disease because it’s found in Saudi Arabia, but it’s also found in Greece, it’s found in Italians and it’s found in South America. But it’s predominately found in African Americans, and we’re not seeing the funds,” Prince said.
Prince’s nonprofit aims to combat the lack of funding by organizing fundraisers, blood drives, meals for in-patient families and helps with volunteers.
“Let’s take this and turn it into something positive. Let’s be the voice,” said Prince.
Lilly said she will do her part by hosting a runway show to support individuals and families affected by sickle cell.
The Walking with a Purpose fashion show is scheduled for Dec. 12.