AUSTIN, Texas — September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of the disease.
Sickle cell disease causes some red blood cells to become deformed.
"It's a blood disorder in the red blood cell that carries oxygen to our bodies and so being a blood disorder it affects every single order system in our body," said pediatric hematologist at Dell Children's Medical Center, Dr. Alicia Chang.
The lifelong painful genetic disease affects roughly 100,0000 Americans every year, mostly African-Americans.
"On a daily basis we do feel like headaches, joint pain or stuff like that," explained 17-year-old John Ukanda.
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John has sickle cell disease and is the oldest of three siblings.
His 16-year-old brother, Given, and 12-year-old sister, Blessing, also are living with the disease.
"If you met them you would not know they have this chronic illness and that they see us so often," said Dr. Chang.
The Ukanda family immigrated to Central Texas from Africa in October 2010 to receive better treatment for the disease.
"When we first transitioned from Africa to America it was very difficult, the transition was very difficult and painful," shared John.
Michel Ukanda is the father of the three children.
"Every 3 months they need to come to see the doctor and they give them the medicine and now they're doing better," said Mr. Ukanda.
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The goal for Dr. Chang and the Ukanda family is to bring awareness of the disease.
"For a chronic illness historically it has not received the funding or exposure of other chronic illnesses," said Dr. Chang.
Dell Children's Comprehensive Sickle Cell Clinic treats more than 200 sickle cell patients.
"We have a school liaison that can advocate for them [patients] in school," said Dr. Chang. "We have a very amazing behavioral health team that sees our patients too here. We know chronic illness, dealing with chronic pain is associated with depression, anxiety a lot can be associated with mental health issues, so we definitely have that resource for our families too."
"As painful as it can be sometimes and like as rough life gets sometimes with this disease, I feel like we need to show people that no matter what happens we can still do basic daily activities and we can still have fun just like everyone else," shared John.