What should you know about chronic complications of sickle cell disease?

Sickle-shaped red blood cells can obstruct small blood vessels and break down more quickly than usual. Over time, this may contribute to anaemia, fatigue, pain episodes, reduced kidney function, eye problems, lung complications, bone or joint damage, and strokes. The complications and their severity vary between people. Pale skin or worsening tiredness can accompany anaemia, while joint pain may reflect bone or blood-flow problems; neither symptom alone identifies a specific complication. A care team uses symptoms, examination and monitoring to track changes.

Keep scheduled reviews and take prescribed treatment consistently. Drink enough fluid for your needs, dress appropriately for cold conditions, and discuss travel, exercise, infections and high-altitude exposure with your clinician. Keep vaccinations and preventive medicines up to date when advised. Ask which symptoms should be recorded, such as pain location, fatigue, fever or changes in vision. Blood tests may help monitor anaemia and organ effects. If family planning is relevant, premarital screening can provide information about haemoglobin traits and inherited risk.

Seek urgent help for fever, chest pain, difficulty breathing, sudden weakness or numbness, trouble speaking, a severe headache, confusion, or a painful erection that does not settle. Severe pain, unusual drowsiness, marked pallor or sudden vision changes also need prompt assessment. Do not wait for a routine appointment if symptoms are new or rapidly worsening, because reduced blood flow or infection can become serious quickly.

Which organs should we monitor in my case? What is my personal plan for fever or a pain crisis? Which blood tests and preventive treatments are due? How should I prepare for pregnancy, surgery or travel?