Pam’s Story | Baltimore, MD
The Maryland Sickle Cell Disease Association
As a woman living with sickle cell, Pam is keenly aware of the gaps in awareness of the disease and uses her voice to ensure that others have access to resources. Pam started her YouTube channel “Advocate 4 Sickle Cell” when her own experiences illuminated that there was limited information available for pregnant women with SCD. Fast forward seven years later, the channel now covers a range of real life topics that people with SCD face.
“Advocacy work helps me be in control of sickle cell and have a seat at the table. With advocacy, I get to be a part of the decisions that are being made surrounding the disease.”
– Pam, living with SCD
Pam’s intentions through her YouTube channel and her SCD advocacy work, including with the Maryland Sickle Cell Disease Association (MSCDA), are to highlight the humanity of SCD. Her goals are to create a network for those living with sickle cell, while also destigmatizing the disease with medical professionals. She articulates, “When medical staff sees you, it’s only in the hospital, and it’s only while you’re in pain. Through personal connection, I like to bring my experience with SCD back to the human side of things.”
People in the SCD community often face misunderstanding of the disease, especially in the emergency room setting. Misconceptions of sickle cell disease pain crises can cause long wait times in hospitals and the failure of doctors to prioritize the level of a patient’s pain. Furthermore, there is a harmful stereotype that associates SCD patients with drug seekers given their need for high dosages of pain medication. Through Pam’s advocacy work, she wants to challenge these notions and bring more options to the SCD community: “Advocacy work helps me be in control of sickle cell and have a seat at the table,” says Pam. “With advocacy, I get to be a part of the decisions that are being made surrounding the disease.” Pam doesn’t want to wait for change, she wants to make it herself. She continues to advocate for more treatment options and foster community to show people living with SCD that they are not alone.