What happens if sickle cell disease is not treated?

Sickle cell disease changes red blood cells so they can become rigid and obstruct small blood vessels. This reduces oxygen delivery to tissues and can cause severe joint or bone pain. Ongoing breakdown of red blood cells may lead to anaemia, with fatigue, pale skin or jaundice. Over time, restricted circulation can affect organs such as the lungs, kidneys, eyes and brain.

Some people also notice blood in the urine or have infections and other complications. The pattern varies, and absence of symptoms does not show that the disease is inactive.

Arrange care with a clinician experienced in sickle cell disease. Evaluation may include a blood test, review of pain and fatigue, and a plan for hydration, medicines, vaccinations and monitoring. Keep a written record of pain episodes, fever, urine changes and new symptoms. Do not stop prescribed treatment without medical advice.

Seek emergency help for chest pain, trouble breathing, sudden weakness, confusion, a seizure, severe or unusual pain, a high temperature, or marked drowsiness. Urgent assessment is also needed for sudden vision changes, persistent vomiting or blood in the urine. Children with sickle cell disease and a fever need prompt medical advice.

Ask which symptoms signal a pain crisis, how to use your prescribed pain plan, what monitoring is needed for organs, and whether family or premarital screening is appropriate.