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History of Sickle Cell
Sickle Cell

Understanding the background of sickle cell can help you and your loved ones have more meaningful conversations about sickle cell awareness.

Barriers to Care: History of Sickle Cell

While sickle cell symptoms have been documented in medical texts since the 1870s, it was not formally identified in the United States until 1910. Dr. James Herrick described the disease as a "peculiar, elongated sickle-shaped erythrocytes," noting the unusual red blood cells were sickle shaped.

Despite sickle cell affecting people of all races, it is often perceived as a “Black disease” because it most often affects the Black community in the United States; unfortunately, this has caused racial bias and has played a role in limiting people from receiving the highest quality care.

Did you know? Did you know?

Did you know? Did you know?

Sickle cell was the first diagnosed genetic disease,
and the first to be linked to the hemoglobin protein

Sickle cell was the first diagnosed genetic disease, and the first to be linked to the hemoglobin protein

Sickle Cell Over The Years

  • Dr. James Herrick notes the sickle shape of red blood cells, identifying sickle cell anemia
  • Sickle cell is identified as a genetic disease
  • The National Association for Sickle Cell Disease is established
  • National Sickle Cell Anemia Control Act is signed into law establishing education, information, screening, testing, counseling, research, and treatment programs for sickle cell
  • Long-term blood transfusions are found to decrease hospitalizations
  • First treatment for sickle cell is approved by the US Food and Drug Administration (FDA)
  • The World Health Organization recognizes sickle cell as a global health crisis; the United States implements mandatory newborn screenings in every state
  • Blood stem cell transplants are shown to stop progression in sickle cell
  • FDA approves 2 new drugs for sickle cell
  • Dr. James Herrick notes the sickle shape of red blood cells, identifying sickle cell anemia
  • Sickle cell is identified as a genetic disease
  • The National Association for Sickle Cell Disease is established
  • National Sickle Cell Anemia Control Act is signed into law establishing education, information, screening, testing, counseling, research, and treatment programs for sickle cell
  • Long-term blood transfusions are found to decrease hospitalizations
  • First treatment for sickle cell is approved by the US Food and Drug Administration (FDA)
  • The World Health Organization recognizes sickle cell as a global health crisis; the United States implements mandatory newborn screenings in every state
  • Blood stem cell transplants are shown to stop progression in sickle cell
  • FDA approves 2 new drugs for sickle cell
Photo of Blaze, living with sickle cell
 

People have heard of sickle cell, but they might not know what exactly it entails. So it’s up to people like me and other advocates to spread the word and get people more involved—just get it out there.”

People have heard of sickle cell, but they might not know what exactly it entails. So it’s up to people like me and other advocates to spread the word and get people more involved—just get it out there.”

BLAZE

Living With Sickle Cell

How A Small Spark Made a Big Impact: 
Sickle Cell and the Black Panther Party 

Even though the underlying cause of sickle cell has been understood for more than a century, advocacy and research have been lacking. Funding for research and treatment has always been far less than other diseases.

Starting in the 1960s, the Black Panther Party worked to expand community-based care for education and treatment of diseases. Part of this initiative was tackling sickle cell, which received little public attention and funding, while affecting a large part of the Black community. Their work in the 1970s towards community-based care created a bigger movement for change in sickle cell, with a collaboration among pre-med students, hospitals, and even pharmaceutical companies donating products.

The Black Panther Party extended their work within health initiatives by setting up national screening programs, and pioneering care for genetic disorders such as sickle cell anemia. A small spark can lead to a big change—and now newborn screening for sickle cell is required by every state in the United States. Increasing discussion about sickle cell and its history may help impact and change bias through discussion and education.

What Can You Do?

Taking time to share the history of sickle cell and your unique experience can be a great first step in sparking change. You can continue to dig deeper by learning how to be more proactive in the management of sickle cell.
Every voice, no matter how big or small,
can spark a conversation and action to
help drive change for sickle cell.


Recognizing how sickle cell impacts your
life may help spark important
discussions with others.
How does sickle cell affect you?