Sickle Cell Disease Foundation: Key Facts

Haemoglobin carries oxygen inside red blood cells. In sickle cell disease, an inherited haemoglobin change can cause cells to curve, stiffen, and break down earlier than expected. These cells may obstruct small blood vessels, leading to pain and reduced oxygen delivery. Early breakdown can cause anaemia, which may show as fatigue, pale skin, dizziness, or reduced stamina. The condition can also affect organs when circulation is repeatedly disrupted.

A person inherits the relevant genes from biological parents; this is why sickle cell disease is not contagious. A [Blood Test](/treatments/diagnostics-and-screening/blood-test/) helps identify the haemoglobin pattern and distinguish disease from trait.

The foundation of care is a relationship with a clinician or haematology team, regular monitoring, prevention of infection, and a written plan for pain and fever. Take prescribed treatment consistently and ask how to prepare for travel, exercise, pregnancy, or procedures. Notice changes in energy, skin colour, pain, urine, vision, and breathing. People considering marriage or pregnancy can discuss inherited haemoglobin conditions through [Premarital Screening](/treatments/diagnostics-and-screening/premarital-screening/).

Contact emergency services for fever, chest pain, breathing difficulty, sudden weakness, confusion, seizure, fainting, or severe pain. Sudden vision changes, severe dehydration, or inability to drink also need urgent assessment. These warning signs can indicate infection, a pain crisis, or reduced oxygen delivery. Keep your diagnosis and medication list accessible so a healthcare team can act on your established plan.

What haemoglobin pattern do I have? How will we monitor anaemia and organ health? Which preventive treatments and vaccines are due? What should my emergency plan say? What should my family or partner know about inheritance?