September is National Sickle Cell Awareness Month in the United States. This event aims to raise awareness about sickle cell disease (SCD) and improve the health outlook and quality of life of individuals living with the condition.
Sickle cell disease (SCD) is a genetic condition in which red blood cells are shaped like a sickle or a letter C instead of being rounded. This causes blood cells to stick together, increasing the risk of blood vessel blockages. Sickle cells do not survive as long as non-sickled cells, which results in a continual shortage of red blood cells.
People with SCD typically experience episodes of severe pain and are at increased risk of numerous health complications.
This article describes the purpose of National Sickle Cell Awareness Month and explains how people can get involved.
The main purpose of National Sickle Cell Awareness Month is to raise awareness about the condition.
SCD affects millions of people globally. However, in the United States, the condition is relatively rare, affecting around 100,000 Americans, according to the
Although SCD can affect anyone, it is much more prevalent among people of certain ethnicities. According to the CDC, around 1 in 365 Black Americans are born with SCD, while around 1 in 16,300 Hispanic Americans are born with the condition.
According to the U.S. Office of Minority Health (OMH), SCD is uncommon enough in the United States that medical professionals rarely encounter individuals with the condition.
Events like National Sickle Cell Awareness Month help educate more people about SCD and the challenges facing those living with the condition. It is also a time for individuals and federal agencies to recommit to improving health outlook and quality of life for people living with the disease.
Another important aspect of National Sickle Cell Awareness Month is to encourage people to undergo screening for the disease.
SCD is a genetic condition that occurs when an individual inherits a gene for sickle cell trait from each parent. Many people who carry the gene are unaware they have it. And if two partners are carriers, there is a 25% chance that their biological child will develop SCD. Screening helps people learn of their SCD status before conceiving children.
There are plenty of ways to get involved with National Sickle Cell Awareness Month. Some examples are outlined below.
Fundraising or donating funds
Many SCD organizations and charities rely heavily on outside funds from individuals and businesses. Monetary donations help support research and clinical trials that aim to improve treatments for SCD and the quality of life of people living with the condition.
Many SCD charities and organizations offer online educational materials about SCD that people can share on social media.
People can also print out education materials and put them in public places, such as:
- staff rooms
- community bulletin boards
Joining in-person events
Each year groups like the Sickle Cell Disease Association of America (SCDAA) hold various in-person events to help raise funds and awareness about SCD. Some of their events include the following activities:
- day outings
People can check here for event updates as National Sickle Cell Awareness Month approaches.
Some SCD organizations and charities let people to attend fundraising events virtually if they cannot attend in person.
Many SCD organizations and charities hold annual fundraising events. Event organizers may seek volunteers to help with event planning, stewarding, or cleaning up at the end of the day.
People can check with their local SCD groups to find out about volunteering opportunities in their area.
Sharing on social media
Social media can be a great way for people to learn about SCD and share their
The OMH recommends creating tweets, posts, reels, or stories sharing educational information or personal stories using hashtags such as:
During National Sickle Cell Awareness Month, the SCDAA often hosts Twitter parties to discuss issues such as recent therapy advancements and how SCD can affect mental health. People can check the SCDAA website closer to September to find out about upcoming Twitter parties for the current year.
In previous years, the SCDAA has also hosted SCD-themed trivia on its various social media platforms each Friday.
Joining a clinical trial
The American National Heart, Lung, and Blood Institute created the Cure Sickle Cell Initiative to help sponsor or lead trials to help increase the medical community’s knowledge of SCD.
The Initiative’s goal is to work alongside industry, policymaking agencies, nonprofit organizations, and members of the sickle cell community to discover promising genetic therapies and safely move them into clinical trials within 5 to 10 years.
Find out more about how to become involved in SCD clinical trials
Blood transfusions are a key part of the treatment process for people with SCD. However, fewer than 10% of people living in the United States donate blood, and only 5% of those who donate are of African ancestry, according to the SCDAA.
This is crucial because people with SCD benefit most from transfusions using blood from people of their own race or a similar ethnicity.
A person who wishes to donate blood can contact their local Red Cross, or register for a virtual blood drive.
According to the
Sub-Saharan Africa experiences the highest rates of SCD worldwide, with over 300,000 babies born with SCD annually. According to a 2022 review, up to 90% of these children will die before age 5.
In the United States, around 1 in 13 Black or African American children are born with the sickle cell trait.
SCD can also affect people with the following ethnic backgrounds, per the OMH:
- Middle Eastern
Doctors most often diagnose SCD during routine newborn health screening tests. Early detection and treatment is
The treatment for SCD differs from person to person and depends on individual symptoms. Currently, the only cure for SCD is a stem cell or bone marrow transplant, which requires a close donor match and poses serious health risks. As such, doctors typically reserve these treatments for the most severe cases.
SCD is a fairly rare condition in the United States, one that disproportionately affects Black or African American people and Hispanic people.
National Sickle Cell Awareness Month helps raise awareness of SCD and its effect on people’s health and well-being. Another of its aims is to advance treatments for SCD and improve health outcomes and quality of life for people living with the condition.
There are plenty of ways people can get involved in National Sickle Cell Awareness Month this September, from sharing educational materials to attending fundraising events and making a donation to a sickle cell charity. Giving blood can also be a great way to directly help someone with SCD.