Living with sickle cell disease

Sickle cell disease changes the shape and flexibility of some red blood cells. They can obstruct small blood vessels and break down sooner, which may cause episodes of severe pain and anaemia. Fatigue, pale skin, and Joint Pain may occur, but symptoms and triggers vary between people.

Cold, dehydration, infection, strenuous exertion, and reduced oxygen can trigger problems for some people. Your care plan should reflect your medical history, usual symptoms, and treatments.

Drink regularly, dress for cold conditions, pace strenuous activity, and carry a clear summary of your diagnosis, medicines, allergies, and usual hospital. Keep vaccinations and scheduled reviews up to date. Take disease-modifying or pain treatment only as prescribed, and ask before starting new medicines.

Learn your personal early warning signs and make a plan for travel, illness, and access to fluids or medical care. A Blood Test may help clinicians monitor anaemia or treatment. Premarital Screening can provide useful information for couples planning a family.

Seek emergency care for chest pain, difficulty breathing, sudden weakness, confusion, seizure, severe headache, or a high fever. Obtain urgent assessment for severe pain that is not responding to your agreed plan, marked worsening fatigue, dehydration, persistent vomiting, or a painful swelling. Do not wait for a familiar crisis pattern when symptoms are new or unusually intense.

What is my personal crisis plan? Which symptoms require emergency care? How should I manage fever, travel, exercise, and pregnancy planning? Which tests and treatments should I expect at follow-up?