Self-help

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.

See below for information about:

Managingpain

Avoiding infections

Pregnancy and contraception

Surgery precautions

When to get medical advice

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 altitudesthe lack of oxygen at high altitudes may trigger a crisis (travelling by plane shouldn't be a problem becauseplanes arepressurised to maintain a steady oxygen level)
• avoid very strenuous exercise people with sickle cell disease should be active, but intenseactivities thatcause 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
• relaxstress 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 preparedto treat pain at home. Keep a ready supply of painkillers ( paracetamol or ibuprofen ) and consider buying some heated pads to soothe the pain.

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 anincreased risk of experiencinga sickle cell crisis.

You may needclose 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 headache , dizziness 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 teamimmediately if you develop any of the above symptoms. If this isn't possible, go to yournearest accident and emergency (A&E) department .If you aren't well enough to travel to hospital yourself, dial 999for an ambulance.

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