Sickle cell disease is more common in certain populations, particularly among individuals with African, Middle Eastern, Mediterranean, and South Asian ancestry.

Living with sickle cell anemia can be challenging. Sickle cell anemia — a genetic disorder characterized by the production of abnormal hemoglobin, causing red blood cells to become rigid and assume a sickle shape — is a chronic and often painful condition that affects various aspects of a person’s life.

La’Shardae Scott is the Director of The Sickle Cell Project of Northwest Ohio, at NHA, a partnership with Nationwide Children’s (Mercy Children’s) and Promedica Health Systems. Since 2018, she has led the project, and she is driven by a powerful purpose.

“I am the mother of two sickle cell warriors,” she said. “And that is a powerful motivator to create change and awareness.”

Each day, she works to help those living with sickle cell and sickle cell trait remain encouraged, informed, and most importantly — validated in the struggles their condition causes.

“My goal is to be a resource for the community here in northwest Ohio,” she explained. “When I was first looking for help when my boys were diagnosed, I felt alone. I don’t want other parents or those with sickle cell to feel that way.”

Much of her work centers on education. “The community at large needs to learn more—schools, workplaces, medical professionals, and even those living with sickle cell.”

The project covers an 11-county region in northwest Ohio, including Lucas, Wood, Fulton, and Sandusky Counties. Each month she holds a support group meeting at Mott Branch Library in Toledo and satellite meetings in other counties are run with partners.

Sickle Cell Project of Northwest Ohio Support Group

Feb. 15, 2024 (usually the third Thursday of each month)

6-8 p.m.

Mott Branch Library

She visits more than 20 schools per year to educate students, teachers, and staff on what its like to live with sickle cell to help them have more compassion for the students who have the disorder. “I can build compassion through understanding,” she said.

She also advocates for those with sickle cell and envisions a world where more members in the community understand their challenges. “Right now, we have a hematologist shortage in this country, primarily adult hematologist, and most patients are seeing pediatric hematologists. That is a real struggle for those aging with sickle cell.”

Another challenge those living with sickle cell face is in the transition from pediatric care to adult care. One of her passions is creating a transition standard to help patients never lose care, even as things like insurance change.

She’s so passionate about it, it was the focus of her doctoral dissertation. “I have created a four-step process that I hope will help young people transition into adulthood with their treatments in place.”

She hopes the work she is doing helps the next generation of those with sickle cell live longer, better lives.

So what is it like living with sickle cell anemia?

Here are some aspects of what it’s like to live with sickle cell anemia:

Pain Episodes (Crisis): Individuals with sickle cell anemia often experience recurrent episodes of severe pain known as “crises.” These crises can vary in intensity and duration and may affect different parts of the body. The pain can be debilitating and require hospitalization or strong pain medications.

Fatigue: Sickle cell anemia can lead to chronic fatigue, making daily activities more challenging. The reduced oxygen-carrying capacity of the blood due to sickle cell-shaped cells contributes to tiredness and weakness.

Complications: The condition can lead to various complications, including an increased risk of infections, stroke, organ damage, and other health issues. Regular medical monitoring and management are essential to prevent and address these complications.

Emotional Impact: Dealing with a chronic illness can have emotional and psychological effects. Individuals with sickle cell anemia may experience stress, anxiety, depression, or feelings of isolation. Support from healthcare providers, family, and friends is crucial.

Treatment Regimens: Managing sickle cell anemia often involves a combination of medications, blood transfusions, and other interventions. Individuals may need to adhere to a strict treatment regimen to prevent and manage symptoms.

Hospital Visits: Sickle cell crises and complications may require frequent hospital visits, impacting daily life and routines. These hospitalizations can disrupt work, school, and social activities.

Genetic Counseling: Individuals with sickle cell anemia may seek genetic counseling when planning a family to understand the risk of passing the condition to their children.

Limited Physical Activities: Due to the risk of triggering pain crises, individuals with sickle cell anemia may need to limit certain physical activities. Staying hydrated and avoiding extreme temperatures can help manage symptoms.

Despite the challenges, advancements in medical care, research, and support services have improved the quality of life for many individuals with sickle cell anemia. It’s important for individuals with this condition to work closely with healthcare professionals to manage their health effectively and seek emotional support from their communities.

Sickle Cell Fast Fact

Sickle cell trait is a mutation that made those with it less susceptible to malaria.

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