ATLANTA, Ga. (Ivanhoe Newswire) – September is Sickle Cell Awareness Month. About 100,000 Americans are affected by the disease, with African Americans being the population most impacted. However, there is a stigma surrounding the condition, from friends, family and even physicians in the healthcare system leading to poor outcomes in treatment, but there’s a woman looking to change that.
The grandma didn’t just pass down her dancing skills, but also the sickle cell gene to her kids. While Lillie has a mild form of sickle cell, her daughter Jessica was born with the most severe form called S.S.
“I at first didn’t believe it,” said Lillie Thomas-Daugherty.
Jessica had been hospitalized 17 times before her third birthday, and as an adult, she must get regular blood transfusions.
“I could say it impacts my life every second, every minute of the day,” said Jessica Smith, Lillie’s daughter.
There is also a stigma. A study found that 63% of nurses incorrectly believe addiction is prevalent in sickle cell patients, but Lille wants to change that mindset.
“Please understand the perception of a person with sickle cell disease is we’re not drug seekers. We have a disease that takes away our energy,” said Thomas-Daugherty.
Lillie wrote a book detailing her family’s journey. The proceeds from each book goes into making a care package for adults hospitalized due to sickle cell. Lillie wants the book to educate others on the disease.
“Don’t judge us by our outside package, because we don’t look like we’re sick,” said Thomas-Daugherty.
And she wants caregivers to cook up some compassion when dealing with those with a disability that can’t be seen with the naked eye.
Lillie’s daughter Jessica now has two daughters of her own. One of them has sickle cell disease and the other has the trait. Lillie says it’s important to get tested to see if you have the sickle cell trait. If both parents have the sickle cell trait, there is a 25% chance that a child could have sickle cell disease.