Sickle cell diseaseLiving with

There are a number of things you can do, and precautions you need to take, to ensure you stay as healthy as possible if you have sickle cell disease.

There are a number of things you can do, and precautions you need to take, to ensure you stay as healthy as possible if you have sickle cell disease.

Managing pain

You can reduce your risk of experiencing painful episodes (sickle cell crises) by avoiding things that can trigger them. You should try to:

  • drink plenty of fluids, particularly during hot weather – dehydration increases the risk of a sickle cell crisis
  • avoid extreme temperatures – you should dress appropriately for the weather and avoid sudden temperature changes such as swimming in cold water
  • be careful at high altitudes – the lack of oxygen at high altitudes may trigger a crisis (travelling by plane shouldn't be a problem because planes are pressurised to maintain a steady oxygen level)
  • avoid very strenuous exercise – people with sickle cell disease should be active, but intense activities that cause you to become seriously out of breath are best avoided
  • avoid alcohol and smoking – alcohol can cause you to become dehydrated and smoking can trigger a serious lung condition called acute chest syndrome
  • relax – stress can trigger a sickle cell crisis, so it may help to learn relaxation techniques such as breathing exercises

Your care team can give you more advice about avoiding triggers.

It's also a good idea to ensure you're prepared to treat pain at home. Keep a ready supply of painkillers (paracetamol or ibuprofen) and consider buying some heated pads to soothe the pain.

Read more about treatments for sickle cell disease.

Avoiding infections

You'll usually be given antibiotics and advised to have vaccinations to help prevent most serious infections, but there are also things you can do to reduce your risk.

For example, you should make sure you follow good food hygiene measures to prevent food poisoning.

  • wash your hands with soap and water regularly – particularly after going to the toilet and before handling food
  • cook food thoroughly – particularly ensure reheated food, meat and most types of seafood are steaming hot in the middle before eating them
  • store food correctly – make sure chilled food is kept in the fridge and cooked leftovers that you intend to reheat later aren't left out for long

You should also make sure you speak to your GP or care team if you're planning on travelling aboard, as this may mean you need extra medication or vaccinations. You may also need to take extra food and water precautions.

For example, if you're travelling to an area where malaria is found, it's important to take antimalarial medication.

Pregnancy and contraception

Women with sickle cell disease can have a healthy pregnancy, but it's a good idea to speak to your care team for advice first because:

  • it may be useful to find out if your partner is a carrier of sickle cell and to discuss what the implications of this are with a counsellor
  • some sickle cell disease medications, such as hydroxycarbamide, could potentially harm an unborn baby and may need to be stopped before trying to get pregnant
  • there's an increased risk of problems such as anaemia, sickle cell pain, miscarriage and pre-eclampsia during pregnancy
  • you may need extra monitoring and treatment during pregnancy to help prevent problems

If you're not planning a pregnancy, you should use a reliable form of contraception.

Surgery precautions

It's important to let your care team know if you need to have an operation under general anaesthetic at any point. You should also tell your surgeon that you have sickle cell disease.

This is because general anaesthetic can cause problems for people with sickle cell disease, including an increased risk of experiencing a sickle cell crisis.

You may need close monitoring during surgery to ensure you're getting enough fluids and oxygen and are kept warm.

Sometimes you may be need a blood transfusion beforehand to reduce the risk of complications.

When to get medical advice

It's important to make sure you know when to get medical advice and where to go because sickle cell disease can cause a number of serious problems that can appear suddenly.

Problems to look out for include:

  • a high temperature (fever) or 38C (100.4F) or above
  • severe pain that isn't responding to treatment at home
  • a very severe headachedizziness or stiff neck
  • breathing difficulties
  • very pale skin or lips
  • sudden swelling in the tummy
  • a painful erection (priapism) lasting more than two hours
  • confusion, drowsiness or slurred speech
  • seizures (fits)
  • weakness on one or both sides of the body
  • changes in vision or sudden vision loss

Contact your GP or care team immediately if you develop any of the above symptoms. If this isn't possible, go to your nearest accident and emergency (A&E) department. If you aren't well enough to travel to hospital yourself, dial 999 for an ambulance.

Make sure that the medical staff looking after you are aware that you have sickle cell disease.

Sickle Cell Society

Finding out as much as possible about sickle cell disease may help you feel more in control of your condition.

The Sickle Cell Society is a UK-based charity for people with sickle cell disease and its website contains a wide range of useful information, including news about ongoing research into the disorder.

Page last reviewed: 16/05/2016
Next review due: 30/04/2019