Pam

Pam’s Story | Baltimore, MD

The Maryland Sickle Cell Disease Association

Pam is living with sickle cell disease

As a woman living with sickle cell disease (SCD), 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.

Through her YouTube channel and her SCD advocacy work, including with the Maryland Sickle Cell Disease Association (MSCDA), Pam aims 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 sickle cell disease back to the human side of things.”

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.


Cortney

Cortney’s Story | Orlando, FL

Kids Conquering Sickle Cell Disease Foundation, FL

Cortney is living with sickle cell disease

Cortney’s aspiration to be a hematology nurse is deeply personal. Currently in nursing school, her frequent hospital visits have shaped her studies. Cortney and her late older brother were both diagnosed with sickle cell disease (SCD) as young children, and the diagnosis has had a profound impact on the way Cortney engages with education.

Despite years of playing catch-up for missed lessons as a result of her hospitalizations, Cortney graduated ahead of her class and continues to excel in academia. “A lot of my control is taken with sickle cell, so there is this part of me that wants to control everything else,” she explains. “That’s why I do really well in school, I want to succeed to spite my disease.” Cortney possesses a quiet determination. When she finishes school, she hopes to work with hematologists to help other patients with sickle cell understand and manage their disease.

The ability to be a self-advocate is one of the many things that children and young adults with SCD must learn in order to combat the misunderstandings surrounding their disease. Cortney learned some of these tactics from her involvement in the Kids Conquering Sickle Cell Foundation. The foundation teaches its’ sickle cell ‘Warriors’ the importance of understanding their diagnosis and gives them the tools to better assert their needs to medical personnel.


Maria

Maria’s Story | New York, NY

Cooley’s Anemia Foundation

Maria is living with beta-thalassemia

Maria looks not at the number of years in her life, but the amount of life that’s lived within her years. She’s learned to take this perspective in order to overcome the daunting diagnosis of beta-thalassemia that she received when she was only two years old. At one point in her life, she was even told she would not be able to have children, a life-long dream of hers. Now a mother of a school-aged child, Maria works to instill confidence, patience and empathy in her daughter, all traits that have gotten Maria through her own journey with beta-thalassemia.

Her mother was her greatest cheerleader, teaching her that, “Your disease is not going to limit you, but a negative mindset will.” With her mother’s motivation and a learned connection between mind and body, Maria became her own fierce advocate. When she learned the misconception that women with beta-thalassemia would not be able to have children, Maria sought support from a global network of patients living with beta-thalassemia. Now, Maria runs her own Facebook group to create a space for pregnant women and mothers living with the disease to ask questions, seek advice and share their experiences.

Maria serves as a member of the executive board of Cooley’s Anemia, a foundation that works to help people afflicted with various forms of thalassemia. In her lifetime, Maria has seen treatment options expand and the understanding of beta-thalassemia patients improve, but she still notices disparities in drug options across global communities. Thinking about the future, Maria has a positive outlook: “I always say, ‘it’s a great time to have thalassemia.’ The current generation of patients living with beta-thalassemia may not have to go through the same level of pain that I went through. With new therapies emerging, I have hope that there will be a disease-modifying treatment or maybe even a cure for beta-thalassemia in their lifetime.”