Living With Sickle Cell Disease

• Avoid situations that may set off a crisis. Extreme heat or cold, as well as abrupt changes in temperature, are often triggers. Only swim in water that is heated to 88 degrees or higher.
• Avoid overexertion and dehydration. Take time out to rest and drink plenty of fluids.
• Do not travel in an aircraft cabin that is unpressurized.
• Take your medicines as your doctor prescribes. Get any medical and lab tests or immunizations that your doctor orders.

See a doctor right away if you have any of the following danger signs:

• Fever
• Chest pain
• Shortness of Breath
• Increasing tiredness
• Abdominal swelling
• Bad headache
• Any sudden weakness or loss of feeling in an arm or leg or the face
• Pain that will not go away with home treatment
• Priapism (painful erection that will not settle)
• Sudden vision change

If your child attends daycare, preschool, or school, speak to his or her teacher about the disease. Teachers need to know what to watch for and how to accommodate your child. (See “Tips for Supporting Students with Sickle Cell Disease”.)

Make and keep regular appointments with your SCD doctor or medical team. These visits will help to reduce the number of acute problems that need immediate care. See your doctor right away if you or your child has an urgent problem.

Your SCD medical team can help prevent complications and improve your quality of life.

Every person experiences pain differently. Work with your doctor to develop a pain management plan that works for you. This often includes over-the-counter medicines, as well as stronger medicines that you get with a prescription.

You may find other methods that help your pain, such as:

• A heating pad
• A warm bath
• A massage
• Physical therapy
• Acupuncture
• Distracting and relaxing activities, such as listening to music, talking on the phone, or watching TV

Living with SCD can be very stressful. At times, you may feel sad or depressed. Talk to your doctor or SCD medical team if you or your child is having any emotional problems. Tell your doctor right away if you or your child is feeling very depressed. Some people find counseling or antidepressant medicines helpful.

You may find that speaking to a counselor or psychiatrist, or participating in a support group is helpful. When families and friends provide love and support to people with SCD, they can help to relieve stress and sadness. Let your loved ones know how you feel and what you need.