Living with sickle cell disease
If you or your child has sickle cell disease, you should learn as much as you can about the disease. Your health care providers are there to help you, and you should feel comfortable asking questions.
Pursue a healthy lifestyle
Like all people, you or your child should strive to maintain a healthy lifestyle that includes:
A nourishing diet
Enough sleep
Regular physical activity
People with sickle cell disease often tire easily, so be careful to pace yourself and to avoid very strenuous activities.
Don’t smoke and try to avoid second-hand smoke. If you drink alcohol, do so in moderation and drink extra water to avoid dehydration.
Prevent and control complications
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 tests, lab tests, or immunizations that your doctor orders.
See a doctor right away if you have any of the following warning 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.”)
Get ongoing care
Make and keep regular appointments with your sickle cell disease 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 sickle cell disease medical team can help prevent complications and improve your quality of life.
Coping with pain
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
Mental health
Living with sickle cell disease can be very stressful. At times, you may feel sad or depressed. Talk to your doctor or sickle cell disease 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 sickle cell disease, they can help to relieve stress and sadness. Let your loved ones know how you feel and what you need.