A mom suffered lifelong pain from sickle cell. Her daughter now works to educate others

Linda Chandler-Jacobs watched for decades as her mother was wracked with mysterious, constant pain.

It wasn't until her mother was lying on her death bed that doctors identified the illness that had been damaging her heart and spine for years: sickle cell disease.

Her mother's death, and the death of a neighbor's child from the same illness, inspired Chandler-Jacobs to learn more about sickle cell. Ultimately, in remembrance of her mother, she established The Potters Smile in 2019 to educate and bring awareness to dental care for those with sickle cell.

Now, in partnership with the Sickle Cell Disease Association of EscaRosa Inc. and Truth for Youth, they will host a community wide blood drive at Truth for Youth located on 401 N. Reus St. at Belmont-Deviliers from 10 a.m. to 2 p.m. on June 11.

Anyone who is medically abled to donate blood is welcomed to come and there will be flyers and information about sickle cell to be handed out during the day. All donors will receive a gift card and free food.

The Potters Smile is a Houston-based 501(c)(3) nonprofit that, according to the organization, is the only one in the United States that addresses the dental issues associated with sickle cell disease. It brings awareness to communities, doctors and dental professionals on the importance of dental care and maintenance for sickle cell patients.

Sickle cell anemia is a blood disorder that affects the shape of red blood cells that carry oxygen through the body. Instead of the usual round and flexible shape, the red blood cells are shaped like sickles or crescent moons, making it hard for oxygen to move through the body and causing fatigue and pain.

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Sickle cell can affect teeth because oxygen depravation may keep bones from reaching maturity and proper density, causing problems in not just in the body but in the mouth.

Chandler-Jacobs said people are often misdiagnosed because they do not know they have sickle cell and are losing their teeth and having dental work done without knowing the root problem.

According to the U.S. Centers for Disease Control and Prevention, sickle cell impacts roughly 1 million to 3 million Americans.

It is particularly prevalent in the African-American community as about one in 13 Black babies are born with the sickle cell trait. Sickle cell impacts African-Americans or those who have African lineage at a disproportionate rate because it is an evolutionary trait that people developed in response to help protect from malaria, which is common in parts of Africa.

The Sickle Cell Disease Association of EscaRosa's mission is to advocate, develop and implement programs and services to benefit individuals suffering from sickle cell. It was founded in 1977 to address the health disparities and medical issues in the Black communities of Escambia and Santa Rosa County.

Walter Wallace, president of Sickle Cell Disease Association of EscaRosa, is also a community activist, and wants to educate the public on the effects of sickle cell.

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"Education is the key and you are the cure," Wallace said. "When you educate somebody else about sickle cell disease, then you are part of the cure.”

The Sickle Cell Disease Association goes to events in Escambia and Santa Rosa County to spread awareness and education on sickle cell. Members also do numerous fundraisers such as a golf tournament on the third Sunday of September, which is National Sickle Cell Awareness Month, where they wear red and black.

“Red is for the blood and Black is for the people,” Wallace described it.

Chandler-Jacobs wants to make sure everyone from the medical and dental professionals to the patients know the nonprofit is here to help with their sickle cell treatments and help them keep their teeth and their confidence while going to a doctor or dentist.

“If we educate the patient, we educate the caretakers, we educate the nurses, we educate the doctors, then everybody's on top of it,” Chandler-Jacobs said.

For more information call Walter Wallace at 850-291-0168.

This article originally appeared on Pensacola News Journal: Sickle cell disease event in Pensacola joined by The Potters Smile