Warrior & Caregiver Resources

Sickle cell disease is an inherited blood disorder. Healthy red blood cells are flexible and move easily through blood vessels. In sickle cell disease, some red blood cells can become rigid and sickle-shaped, affecting how blood and oxygen move through the body.

Common sickle cell genotypes

• HbSS: commonly called sickle cell anemia.
• HbSC: another common form of sickle cell disease.
• HbS beta-thalassemia: includes different beta-thalassemia variants.
• Other less common forms: may include HbSD, HbSE and HbSO.

Sickle cell trait is different from sickle cell disease. A person with trait carries one sickle cell gene and usually does not have the same clinical pattern as someone living with sickle cell disease.

Possible signs and complications

Experiences vary from person to person and may include anemia and fatigue, episodes of severe pain, swelling, infections and other complications that require ongoing medical care.

Everyday support matters

Regular medical follow-up, an individualized treatment plan, hydration, appropriate rest, nutrition, emotional support and knowing when to seek urgent care can all be important parts of living with sickle cell disease.

Encourage genotype awareness, break stigma and support warriors without reducing them to a diagnosis.

Some people living with sickle cell disease notice yellowing in the whites of the eyes. This can happen when bilirubin builds up as red blood cells break down more rapidly than usual.

The science behind it

Red blood cells affected by sickle cell disease may have a shorter lifespan than typical red blood cells. Increased breakdown of red blood cells is called hemolysis. One of the substances produced during this process is bilirubin, which can contribute to yellowing of the eyes or skin.

What warriors and allies should remember

• Yellowing of the eyes associated with bilirubin is not contagious.
• Changes can vary from person to person and may be more noticeable at some times than others.
• New, significant or worsening yellowing should be discussed with a healthcare professional because jaundice can have different causes.

A visible symptom should never become a reason for stigma. Choose understanding, dignity and compassion.

Conversations about sickle cell disease often focus on physical pain, but the impact can extend far beyond a crisis itself.

Families may also face transportation costs, medication expenses, time away from school, interrupted work, reduced income and the emotional load of navigating repeated healthcare visits.

A pain crisis may last for a period of time, while the practical and financial effects can continue long after the immediate medical event has ended.

Advocacy also means working toward accessible care, supportive schools and workplaces, informed communities and systems that recognize the full burden carried by warriors and families.

Many people know their blood group but have never confirmed their genotype. Knowing your genotype can be an important part of understanding sickle cell disease and making informed health and reproductive decisions.

Commonly discussed genotypes

• AA: does not have sickle cell trait or sickle cell disease.
• AS: has sickle cell trait.
• SS: has sickle cell anemia, a form of sickle cell disease.
• Other forms of sickle cell disease can include SC and sickle beta-thalassemia.

Having sickle cell trait is not the same as having sickle cell disease. Genotype education should be used to inform and empower people, not to shame, stigmatize or condemn.

Know your status. Understand what it means. Ask questions and seek appropriate genetic counselling when making family-planning decisions.

Sickle cell trait and sickle cell disease are not the same.

Sickle Cell Trait (SCT)

A person with sickle cell trait has inherited one sickle hemoglobin gene and one normal hemoglobin gene, commonly written as AS.

Most people with sickle cell trait live normal, healthy lives and do not experience the chronic complications of sickle cell disease. Health complications can occur under rare and extreme circumstances.

Sickle Cell Disease (SCD)

Sickle cell disease is a group of inherited blood disorders in which a person inherits gene variants that cause abnormal hemoglobin.

Forms can include HbSS, HbSC and sickle beta-thalassemia. People living with SCD may experience pain crises, anemia, infections and other complications requiring ongoing medical care.

Having sickle cell trait does not mean someone is “half sick,” and living with sickle cell disease does not prevent someone from living a meaningful and purpose-filled life.

A sickle cell pain crisis, also called a vaso-occlusive episode, can occur when sickled red blood cells contribute to blocked or reduced blood flow, limiting oxygen delivery to tissues and causing pain.

Pain may affect the chest, back, abdomen, arms, legs, joints or bones and may last for hours or days.

The pain is real even when you cannot see it

Someone may be smiling, working or appear “fine” while experiencing intense pain that is invisible to others.

• Believe them when they say they are hurting.
• Listen without judgment.
• Show compassion.
• Take their pain seriously.
• Support them in following their medical care plan and seeking appropriate care.

Awareness is not simply knowing sickle cell exists. It also means responding with knowledge, empathy and compassion.