What Is sickle cell disease? Everything you need to know (and how to help)
Published in recognition of World Sickle Cell Day on June 19
Every year on June 19, World Sickle Cell Day helps raise awareness of sickle cell disease, an inherited blood disorder that affects millions of people around the world. Sickle cell disease has historically received less public attention and research funding than its impact warrants. Whether you’re learning about it for the first time or looking for ways to help, here’s what to know.
What is sickle cell disease?
Sickle cell disease, often called SCD, is an inherited blood disorder that affects red blood cells. Red blood cells are usually round and flexible, which helps them move through blood vessels and carry oxygen throughout the body. In people with sickle cell disease, some red blood cells become hard, sticky, and shaped like a crescent, or sickle.
These cells can get stuck in blood vessels, blocking blood flow and preventing oxygen from reaching organs and tissues. They also break down earlier than healthy red blood cells, which can lead to anemia, fatigue, pain, and other complications over time.
Sickle cell disease is genetic. A person is born with SCD when they inherit two sickle hemoglobin genes, one from each parent. It is not contagious.
What is sickle cell disease?
Sickle cell disease, often called SCD, is an inherited blood disorder that affects red blood cells. Red blood cells are usually round and flexible, which helps them move through blood vessels and carry oxygen throughout the body. In people with sickle cell disease, some red blood cells become hard, sticky, and shaped like a crescent, or sickle.
These cells can get stuck in blood vessels, blocking blood flow and preventing oxygen from reaching organs and tissues. They also break down earlier than healthy red blood cells, which can lead to anemia, fatigue, pain, and other complications over time.
Sickle cell disease is genetic. A person is born with SCD when they inherit two sickle hemoglobin genes, one from each parent. It is not contagious.
What are the symptoms of sickle cell disease?
Sickle cell disease affects people differently. Common symptoms and complications can include:
- Chronic pain, caused by sickled cells blocking blood flow.
- Anemia, which can cause fatigue, weakness, and shortness of breath.
- Swelling of the hands and feet, often one of the first signs in infants.
- Frequent infections, which can happen when sickle cell disease damages the spleen.
- Delayed growth in children.
- Vision problems caused by blocked blood vessels in the eye.
- Stroke, which can happen when sickled cells block blood flow to the brain.
Many people with SCD experience painful episodes called sickle cell crises. These episodes can last for hours or days and may require hospital care. Triggers can include cold temperatures, dehydration, stress, or illness.
What causes sickle cell disease?
Sickle cell disease is caused by a change in the gene that helps the body make hemoglobin, the protein in red blood cells that carries oxygen. This gene change produces hemoglobin S, also called HbS. HbS can cause red blood cells to become hard, sticky, and sickle shaped. These cells break down much earlier than normal and can block blood flow, causing pain and organ damage.
To have SCD, a child must inherit the HbS gene from both parents. If a child inherits the gene from only one parent, they have what is called sickle cell trait. People with sickle cell trait usually do not have symptoms of SCD, but they can pass the gene to their children.
SCD is more common in people with ancestry from:
- Sub-Saharan Africa
- South Asia
- The Middle East
- The Mediterranean
Sickle cell disease can affect people of any background. These regions have higher prevalence in part because the sickle cell trait offered some protection against severe malaria in affected areas.
In the United States, about one in every 365 Black or African American babies is born with sickle cell disease, according to the CDC.
How is sickle cell disease treated?
Treatment for sickle cell disease has improved in recent years, but care can still be complex and costly. Treatment depends on a person’s age, symptoms, health history and access to specialized care.
Most care focuses on reducing pain, preventing infections and complications, treating anemia, and helping people manage daily life with the condition. Treatment may include medication, pain management, blood transfusions, stem cell transplant, or gene therapy.
1. Medication for sickle cell disease
Hydroxyurea is one of the most widely used medications for sickle cell disease. It can help reduce painful crises, lower the need for blood transfusions, and reduce the risk of some complications. It works by helping the body make more fetal hemoglobin, a type of hemoglobin that does not sickle in the same way.
Crizanlizumab is another medication used for some people with sickle cell disease. It helps reduce how often pain crises happen by making it harder for blood cells to stick to blood vessel walls. Availability and prescribing guidance can vary, so people should talk with their care team about whether it may be an option.
Voxelotor, sold under the brand name Oxbryta, was previously used to treat sickle cell disease. Pfizer voluntarily withdrew it from markets worldwide in September 2024 after determining that its benefits no longer outweighed its risks for the approved patient population. The FDA also alerted patients and health care professionals about the withdrawal due to safety concerns.
Pain management is also an important part of care. During a sickle cell crisis, treatment may include over-the-counter pain relievers, prescription pain medication, fluids, oxygen, or hospital care, depending on the person’s symptoms and medical needs.
2. Other treatments for sickle cell disease
Blood transfusions can help treat severe anemia, reduce the risk of stroke, and manage serious complications. People with sickle cell disease often need special blood matching for transfusions to reduce the risk of complications.
A stem cell transplant, also called a bone marrow transplant, is a potential cure for some people with sickle cell disease. It requires a well-matched donor and can carry serious risks, so it is only an option for some patients.
Gene therapies are also becoming part of sickle cell disease care for certain patients. In December 2023, the FDA approved Casgevy and Lyfgenia, the first cell-based gene therapies for sickle cell disease, for people 12 and older who meet specific eligibility requirements. Casgevy is also the first FDA-approved therapy to use CRISPR gene-editing technology.
These treatments are important advances, but they are not available or appropriate for everyone. They require specialized care and can involve major medical risks and costs.
Medical information in this article is for educational purposes only and is not medical advice. Anyone living with sickle cell disease should talk with a qualified health care professional about their care options.
Who does sickle cell disease affect?
Sickle cell disease is a global condition. It disproportionately affects people of African, South Asian, Middle Eastern, and Mediterranean ancestry, but it can affect people of any background. Nearly 8 million people are living with sickle cell disease around the world, according to global health estimates. In the United States, about 100,000 people are living with SCD, according to the U.S. Department of Health and Human Services Office of Minority Health.
Despite its impact, sickle cell disease has historically received less research funding and public attention than many advocates believe it deserves. People living with SCD, their families, health care providers, researchers, and community organizations continue working to improve care, expand access, and support more treatment options.
How you can help through GoFundMe
People and communities are raising money on GoFundMe to help cover treatment costs, daily expenses, travel for care, and recovery support related to sickle cell disease. Before donating, please visit each fundraiser page directly for the latest details, current status, and organizer updates.
- Support Caryeshé’s path to treatment: Caryeshé was diagnosed with sickle cell anemia at 15 months old. Now 21, she’s a university student in Miami who is working toward her degree while managing pain crises, hospital stays, and medical procedures. Her fundraiser shares that she hopes to pursue gene therapy, a treatment path that can involve significant medical costs and specialized care. She also hopes to become a pediatric hematologist so she can support others who know what life with sickle cell disease can feel like. Funds are being raised to help cover gene therapy costs, medications, and hospital bills.
- Support Danyella’s treatment: Danyella is 17 and lives with sickle cell disease in Minneapolis. Her fundraiser shares that she relies on pain medication to get through each day, but she’s still focused on graduating high school in 2026 and pursuing her dream of becoming a neurologist. According to her fundraiser, doctors have identified Danyella as a candidate for FDA-approved gene therapy and a bone marrow transplant. Both treatment paths can require specialized care, recovery time, and added costs for families. Donations can help support her treatment and recovery.
- Support Ngozi during recovery: Ngozi has lived with sickle cell anemia throughout her life. Her fundraiser shares how the disease has affected her work, relationships, and time with her 9-year-old son. Now, she’s preparing for a procedure that could help change what daily life looks like for her and her family. During recovery, she’ll need support beyond the procedure itself, including caregiver help, medical bills, and everyday living expenses. Donations can help her focus on healing while staying supported at home.
- Help people living with sickle cell disease after a crisis: Kaya Wilson’s annual fundraiser supports people living with sickle cell disease after a crisis. Now in its third year, the fundraiser says donations are redistributed directly to verified recipients who need support getting back on their feet. That support can help people cover urgent needs after a crisis, when pain, hospital care, missed work, and recovery time can create financial strain. The fundraiser offers a way to help multiple people in the sickle cell community through one shared effort.
- Help Wesley rebuild after years of complications: Wesley is 25 and has lived with severe sickle cell disease since birth. His fundraiser shares that he has experienced serious complications, including a heart attack, a stroke, seizures, kidney damage, brain damage, and time on life support. He’s now been approved for a bone marrow transplant. His mother is raising money to help cover his care, mental health support, and recovery needs as he works toward a more stable future. Donations can help support Wesley through the next stage of treatment and the long recovery that may follow.
Organizations working to support people with sickle cell disease
You can also support established nonprofits working on sickle cell disease research, advocacy, education, and community support. These nonprofits are verified on GoFundMe, so donors can support their work directly.
- Sickle Cell Strong: Sickle Cell Strong is a Cleveland, Ohio-based nonprofit founded by the mother of a child living with sickle cell disease who has been hospitalized more than 100 times. The organization provides educational resources, community events, care bags for families during hospital stays, and parking passes for long-term hospitalizations. Sickle Cell Strong’s long-term goal is to open a year-round camp for children affected by sickle cell disease. The nonprofit was established in 2025 and verified on GoFundMe in 2026.
- Florida Sickle Cell Center, Inc.: Florida Sickle Cell Center, Inc. is a Gainesville, Florida-based nonprofit founded by a clinician who has researched sickle cell disease and lost family members to the condition. The organization is working to develop a dedicated sickle cell care model, conduct needs assessments, publish care recommendations, and influence policy to improve treatment outcomes. The nonprofit was established in 2020 and verified on GoFundMe in 2023.
- Agape Roots Foundation: Agape Roots Foundation is a Port Saint Lucie, Florida-based advocacy nonprofit dedicated to raising public awareness about sickle cell disease and sickle cell trait. The organization also works to address the challenges people face when accessing care and support. Agape Roots Foundation focuses on community health, education, and urgent action for people affected by sickle cell disease. The nonprofit was established in 2021 and verified on GoFundMe in 2022.
- Bone Marrow Connection: Bone Marrow Connection is a Sherwood, Oregon-based nonprofit working to help more patients find bone marrow or stem cell donor matches. The organization focuses on patients with blood cancers and blood disorders that may be treated with bone marrow or stem cell transplant, including some people living with sickle cell disease. Bone Marrow Connection works to grow donor registration, support patient families, and raise awareness about the need for more diverse donor registries. The nonprofit was established in 2020 and verified on GoFundMe in 2021.
Final word
Sickle cell disease affects millions of people around the world. The people, families, and communities living with it deserve more awareness, more support, and more access to compassionate care. World Sickle Cell Day on June 19 is one chance to help.
You can donate, share a fundraiser, support a nonprofit, or take time to learn more. Every act of help matters.
Sources and further reading
For medically reviewed information about sickle cell disease, visit:
| Organization | Resource | Link |
|---|---|---|
World Health Organization (WHO) | Sickle Cell Disease Fact Sheet | who.int |
| Centers for Disease Control and Prevention (CDC) | About Sickle Cell Disease | cdc.gov |
| National Heart, Lung, and Blood Institute (NHLBI) | Sickle Cell Disease Research & Information | nhlbi.nih.gov |
| U.S. Department of Health and Human Services Office of Minority Health | Sickle Cell Disease Resources | minorityhealth.hhs.gov |
| American Society of Hematology (ASH) | Clinical Practice Guidelines on SCD | hematology.org |
| Sickle Cell Disease Association of America (SCDAA) | Patient Resources & Advocacy | sicklecelldisease.org |
Medical information in this article is for educational purposes only. Always consult a qualified health care professional for medical advice, diagnosis, or treatment.