Rewriting the Narrative Around Sickle Cell Disease Through Awareness

By Sickle Cell Association of South Louisiana

Is asking for health equity too much to ask for? Health equity seems to be a simple ask of the healthcare system for individuals with sickle cell disease (SCD), their caregivers, and advocates. Organizations and SCD Warriors have been fighting for fair and just treatment through sickle cell disease. Not many people know about it. So, what is it? Sickle cell disease is a genetic blood disorder that affects the hemoglobin in red blood cells, leading to a crescent or sickle-like shape. This unique shape makes the cells sticky and rigid, causing them to get stuck in blood vessels and impede oxygen flow. Consequently, sickle cell disease patients experience chronic pain and fatigue and are prone to severe complications.

There is a lot you don’t know about sickle cell, and that is a disease, too! Organizations like the Sickle Cell Association of South Louisiana have been advocating and serving the sickle cell community in Baton Rouge since 1974. There are several things that you can do to help make a difference. Here are some things to consider this September for Sickle Cell Awareness Month.

Empowering Lives Through Awareness:
Awareness is the foundation upon which we can build a brighter future for individuals living with sickle cell disease. Understanding their challenges can promote inclusivity, empathy, and support within our communities.

Education for All:
Our first step is to educate the public about sickle cell disease. Breaking down misconceptions and fostering understanding can help dispel stigma and enable those with sickle cell disease to live their lives with dignity and respect.

Early Screening and Treatment:
Every baby born in Louisiana is tested for sickle cell disease, and families are notified. Community-based organizations like us, Sickle Cell Association of South Louisiana, help support families with care coordination throughout life. With early diagnosis and support, individuals can effectively manage their sickle cell disease and live thriving lives. By encouraging fair treatment and access to proper healthcare, we can improve the quality of life for those affected.

Community Support:
As SCASL raises awareness, offering support to individuals and families living with sickle cell disease is essential. Creating a supportive network can be a source of strength, inspiration, and solidarity for SCD patients. And finding ways to partner and support SCASL helps ensure the sickle cell community has resources available.

Embrace the power of unity and compassion by joining our mission to raise awareness for sickle cell disease and our vision to rewrite the narrative around sickle cell disease. Every voice matters; together, we can build a more inclusive and supportive world for our Sickle Cell Warriors.

We invite you to get involved with SCASL, donate blood when you can, and join us for community events to show your support. SCASL will host its annual Ryan’s Run/Walk 5K on Saturday, Sept. 16, at 8 a.m. in downtown Baton Rouge. The event is in honor of Sickle Cell Awareness Month.