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31-07-2024 Team Medicover hematology

Written by Medicover Team and Medically Reviewed by Dr Lavanya Garapati, Hematologist

Sickle Cell Day: Raising Awareness and Inspiring Hope

Around 3,00,000 babies are born each year with severe hemoglobin disorders!

Hemoglobin disorders affect the normal function of hemoglobin in red blood cells. These are hereditary diseases that cause the size and shape of red blood cells to change, reducing the blood's oxygen-carrying ability. The most common hemoglobin disorder is sickle cell anaemia.

This year on World Sickle Cell Day-2025, the theme for the event is "Shine the Light on Sickle Cell", with the goal to increase public knowledge and understanding of sickle cell disease.

Let's raise awareness and reduce the stigma experienced by families with sickle cell disease! Most people are unaware that they have sickle cell trait since the symptoms are usually overlooked. That is why it is critical to get tested.

Why is World Sickle Cell Day Celebrated?

World Sickle Cell Day, observed annually on June 19, is celebrated to raise awareness about sickle cell disease among communities, healthcare providers and policymakers.

In India, Sickle Cell Day aligns with this global event highlighting the need for early diagnosis, better treatment access and support for patients. It’s a platform to advocate for research reduce stigma and ensure those affected receive the care they need.

By raising awareness, we empower individuals to get tested and support families navigating this challenging condition.

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The concern now is: Can sickle cell be reversed?

Currently, there is no cure for sickle cell disease. Some children with the disease have been successfully treated with few procedures. This approach, however, is not undertaken very often due to the significant risks involved. Let’s learn more about the disease in detail.

What is Sickle Cell Anemia?

Sickle cell anaemia is a group of genetic illnesses that are also known as sickle cell disease. This has an impact on the structure of red blood cells, which transport oxygen throughout the body.

Red blood cells, which are usually round and flexible, can freely pass through blood vessels. In sickle cell anaemia, certain red blood cells become sickles or crescent moons and get stiff and sticky, which can slow or block blood flow.

Most people with sickle cell anaemia have no cure. Treatments can alleviate pain and help prevent disease complications.

Causes and Genetic Basis

A mutation in the HBB gene, which makes part of hemoglobin, causes SCD. This glitch creates hemoglobin S, which warps red blood cells when oxygen is low. You need two copies of this mutated gene - one from each parent - to have SCD. If you have just one, you’re a carrier with sickle cell trait, usually without symptoms but able to pass it on. The mutation likely stuck around because it offers some protection against malaria for carriers.

How it Affects the Body

Sickle cells are stiff and sticky, blocking blood flow and starving tissues of oxygen. This can lead to:

Pain crises: Intense pain in bones, joints or organs when blood flow gets blocked.
Anemia: Sickle cells die off fast—lasting only 10-20 days compared to 120 for normal cells—leaving you tired and weak from low red blood cell counts.
Infections: The spleen often gets damaged, making kids especially prone to infections.
Organ damage: Blocked blood flow can hurt the lungs, kidneys, liver or brain, even raising stroke risk.
Other issues: Slowed growth, vision trouble or ongoing pain.

Symptoms differ from person to person, and without care like staying hydrated, managing pain, blood transfusions, or meds like hydroxyurea complications can turn serious.

What are the Symptoms of Sickle Cell Anemia?

Here are some symptoms of sickle cell anemia include:

Fatigue and shortness of breath
Slowed growth and delayed puberty in children
Frequent infections
Stroke
Eye problems, including blindness
Jaundice (yellowing of skin and whites of eyes)
Pale skin and fingernails

Symptoms of Sickle Cell in a Child

In children, sickle cell anemia may present as excessive tiredness, swollen hands or feet, frequent infections, or delayed growth. Parents may notice their child struggles with physical activities or experiences unexplained pain.

Early recognition of these symptoms is crucial for timely diagnosis and management, which is why campaigns like World Sickle Cell Day emphasize testing and awareness.

How is Sickle Cell Anemia Diagnosed?

Doctors diagnose sickle cell anemia by using a blood test called hemoglobin electrophoresis. A blood test can detect the type of hemoglobin that causes sickle cell anaemia. After that, the sample is sent to a laboratory to be checked for sickle cell hemoglobin.

The physician will also inquire about a history of painful crises, chest pain, neurological problems and infection history.

He or she may then do a physical examination, focusing on the heart, lungs, joints, eyes and neurological system.

Treatment for Sickle Cell Anemia

The aim of sickle cell anaemia treatment is to avoid pain episodes, reduce symptoms and prevent complications. Treatment options include medication and surgical procedures:

Hydroxyurea (Droxia, Hydrea, Siklos)
L-glutamine oral powder (Endari)
Crizanlizumab (Adakveo)
Voxelotor (Oxbryta)
Pain-relieving medications

Surgical and Other Procedures

Blood Transfusions:

Used to treat and prevent problems such as stroke in people with sickle cell disease.
Involves collecting red blood cells from donated blood and administering them through a vein.
Increases the quantity of normal red blood cells, reducing symptoms and complications.

Stem Cell Transplant:

Commonly known as a bone marrow transplant.
Replaces sickle cell anemia-affected bone marrow with healthy bone marrow from a donor.
Usually involves a matched donor, such as a sibling who does not have sickle cell anemia.
Recommended only for those with severe sickle cell anemia symptoms and issues due to transplant risks, including mortality.
The only known cure for sickle cell anemia.

Regular Doctor Visits:

It is essential for the comprehensive care of individuals with sickle cell disease. Immediate medical attention is imperative for symptoms, which may include:

Fever or any signs of infection
Breathing issues
Intense pain in any part of the body
Neurological symptoms

Living with Sickle Cell Disease: Navigating Life with Strength

Living with Sickle Cell Disease (SCD) comes with challenges, but with the right strategies, support and mindset, people can manage their condition and live fulfilling lives. Here’s a guide to lifestyle tips, emotional and mental health support and the power of community through support groups and advocacy.

Lifestyle Tips

Managing SCD is about staying proactive and maintaining your body's health as much as possible. Here are some practical ways to navigate daily life:

Stay hydrated: Drinking plenty of water helps keep blood flowing smoothly and reduces the risk of sickle cells clogging vessels. Carry a water bottle and sip throughout the day.
Eat well: A balanced diet with fruits, vegetables, whole grains and lean proteins supports overall health. Foods rich in iron, like spinach, can help with anemia, but check with your doctor about supplements.
Avoid triggers: Extreme cold, heat, or stress can spark pain crises. Dress for the weather, pace yourself during physical activity and practice relaxation techniques like deep breathing.
Exercise gently: Low-impact activities like walking or yoga can boost energy and circulation without overdoing it. Always talk to your healthcare team before starting new routines.
Keep up with medical care: Regular checkups, vaccinations and medications like hydroxyurea can prevent complications. Work closely with your doctor to create a tailored care plan.
Rest up: Fatigue is common with SCD, so prioritize sleep and listen to your body when it needs a break.

Small, consistent habits can make a big difference in managing symptoms and staying strong.

Emotional and Mental Health Support

SCD can take a toll on your mental and emotional well-being, especially with the unpredictability of pain crises and ongoing health challenges. Here’s how to care for your mind and heart:

Acknowledge your feelings: It’s okay to feel frustrated, scared or overwhelmed. Naming those emotions is the first step to addressing them.
Talk it out: A trusted friend, family member, or therapist can provide a safe space to share what you’re going through. Therapy, like cognitive behavioral therapy (CBT), can help manage stress and build coping skills.
Practice self-care: Find what calms you—whether it’s journaling, meditation, listening to music, or spending time with loved ones. Even short moments of joy can lift your spirits.
Set realistic goals: Chronic illness can make life unpredictable, so focus on what you can control. Celebrate small wins, like sticking to a hydration goal or making it to a doctor’s appointment.
Seek professional help: If you’re feeling down or anxious for long periods, a mental health professional can offer strategies to navigate those feelings. Many hospitals with SCD programs have counselors familiar with the disease.

Taking care of your emotional health is just as vital as managing physical symptoms—it’s all part of staying whole.

Support Groups and Advocacy

No one should face SCD alone and connecting with others can be a game-changer. Support groups and advocacy efforts offer community, hope and a chance to make a difference:

Join a support group: Groups like the Sickle Cell Disease Association of America (SCDAA) or local organizations host in-person and online meetups where you can share experiences, tips and encouragement. Hearing from others who get it can feel like a lifeline.
Find online communities: Platforms like X or apps like the Sickle Cell Society’s forums connect people globally. These spaces let you swap stories, ask questions and find solidarity, especially on tough days.
Get involved in advocacy: Organisations like the Global Alliance of Sickle Cell Disease Organisations (GASCDO) or SCDIO empower people to raise awareness, push for better healthcare policies and fund research. Events like World Sickle Cell Day (June 19) are great opportunities to join campaigns or share your story.
Educate others: Talking openly about SCD helps break stigma. Whether it’s at school, work or in your community, sharing your experience can inspire change and understanding.
Support research and blood donations: Advocacy groups often work to fund new treatments and encourage blood donations, which are crucial for SCD patients who require transfusions.

Being part of a community reminds you that you’re not alone and your voice can help shape a brighter future for everyone with SCD.

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Conclusion

World Sickle Cell Day 2025 theme, celebrated on June 19, is a vital opportunity to unite in support of those affected by sickle cell anemia.

By raising awareness, promoting early diagnosis through tests like hemoglobin electrophoresis and advocating for better healthcare, we can improve outcomes for patients and families.

In India, Sickle Cell Day highlights the importance of community-based screening and education in addressing the high prevalence of the disease.

Let’s shine the light on sickle cell disease, reduce stigma and work toward a future where effective treatments and cures are accessible to all.