Breaking Down the Stigma Surrounding Sickle Cell Disease

Sickle cell disease (SCD) causes red blood cells to resemble sickles, which get stuck in blood vessels and block blood flow. This can lead to pain, infections, and organ damage.

Stigma impacts the quality of life of people with SCD and is a barrier to self-management.


People with sickle cell often face negative reactions from friends, family and healthcare providers. This can undermine patient confidence in the healthcare system and deter them from seeking treatment. Some even avoid medical treatment altogether, especially in low-resource countries with limited access to immunizations and other lifesaving treatments.

A hematologist or other healthcare provider can help to change these negative perceptions by including patients with sickle cell disease on anti-racism task forces, providing annual racial implicit bias training, and developing partnership strategies between healthcare providers and patients that incorporate shared decision-making. Hematologists can also improve healthcare systems by incorporating SCD-specific pain management protocols and implementing formal reporting mechanisms that enable patients with sickle cell to report concerns about racism or inequity safely.

People with sickle cell can learn to manage their condition and live a full life. The support of their healthcare team, community, and sickle cell support groups can help them strengthen, and they can seek empowerment by writing about their experiences, sharing personal anecdotes, and instructing healthcare personnel who aren’t hematologists about the condition. They can even become advocates for change at the community, healthcare system, and policy level by advocating for better sickle cell funding, research, and awareness.


Sickle cell disease is an inherited red blood cell disorder. It causes your blood cells to turn from round, flexible discs into sticky, sickle-shaped cells that do not bend and can block blood flow to body parts. This can cause pain, organ damage, and other health problems.

People with sickle cell disease often have to explain their condition to others. Stress and feelings of stigmatization may result from this. Listening is a way to break down those barriers. It involves being present, free of distractions, and fully engaged with the person talking to you.

For example, if someone you know is telling you about their experience with sickle cell and you are tempted to interrupt, think about whether that interruption will help or hurt the conversation. Rather than interrupting, ask questions and show genuine curiosity.

Opening up about how sickle cell disease impacts your life is important so your healthcare team can best support you. This is especially relevant if you experience a sickle cell disease consequence such as an infection or a painful episode (a crisis). Recording your symptoms and sharing them with your medical team may be beneficial. Regular checkups can prevent serious complications and help you get the needed treatment.


Afraid of judgment or misunderstanding, people with sickle cell often choose not to discuss their condition with others. Sharing your story, however, might make it easier for people to support you and understand the difficulties of living with sickle cell anemia.

Red blood cells typically have a disc shape and are sufficiently flexible to bend and squeeze through tiny blood arteries that deliver oxygen throughout the body. But in sickle cell disease, the red blood cells have abnormal solid hemoglobin and take on a C-shaped, or “sickle” shape that can block blood flow to parts of the body.

A shortage of oxygen in the blood also makes sickle cell patients more susceptible to infections and other health issues. Pain and other symptoms may result from this, along with organ damage, a stroke, acute chest syndrome, priapism (painful extended erections), and spleen damage (which reduces the spleen’s ability to filter blood).

Fortunately, some treatments can reduce the frequency of pain episodes and other complications. These can be delivered in various ways, from oral medications to intravenous fluids. Talking to your healthcare team about what treatment options are best for you is important.


People with sickle cell disease have a genetic condition that affects hemoglobin, the protein inside red blood cells that binds to oxygen and carries it to tissues in the body. In sickle cell disease, abnormal hemoglobin molecules stick together, forming long rod-like structures. These sickle-shaped red blood cells have difficulty changing shape and can block small blood vessels. They also don’t last as long as normal red blood cells and may cause serious health problems, including a stroke or pain.

For assistance in identifying and managing sickle cell disease, see a hematologist or physician specializing in blood disorders. However, finding one will be challenging, especially in remote areas.

People with sickle cell disease say they experience stigma in many ways. They feel they’re mistreated and discredited by healthcare workers and their families because of their sickness. They are told they don’t belong in specific social environments and must lie about their appearance so they don’t get bullied. Also, they are often misdiagnosed and receive substandard care because their doctors don’t understand the disease’s effects.

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