Living With Sickle Cell Disease: What Helps

You can live a full, active life when you have sickle cell disease. You can take part in most of the same activities as other people. Making smart choices is important in keeping a minor illness from flaring into a crisis.

Sickle cell disease (SCD) is an inherited disorder in which the shape of red blood cells are C-shaped sickles that can get stuck in blood vessels and block them. This blockage is called a pain crisis or sickle crisis.

You won’t have total control over how SCD affects your body. But you can take steps to manage pain and to reduce your chances of problems.

Dealing With Pain

SCD varies widely person to person. The severity of pain can range from mild to severe. Likewise, the methods to relieve it also can differ. Here are some good guidelines to follow:

  • Talk with your doctor. Discuss your symptoms and find ways to relieve your pain. This may include medicine and other relief methods, including heating pads or physical therapy.
  • Use pain medicines with caution. Talk with your doctor about what over-the-counter drugs are best for you. Some medication, such as ibuprofen (Advil, Motrin) or naproxen sodium (Aleve), may affect your kidneys.
  • Look for pain triggers. Every time you’re in sudden pain, try to figure out what may have caused it. Although it’s not obvious at first, having a long-running list over time could help you find a link.
  • Find what works for you. There isn’t one pain relief that works for everybody. You may have to try different things, such as a warm bath, a massage, or acupuncture. Also, do the things that help you relax, like listening to music or hanging out with friends.

Helpful Things

SCD is a complex disease, so it’s important to see your doctor for regular health checkups. They could help you cut down the number of problems that may need urgent medical care. Here are some other ways to take care of yourself:

  • Drink plenty of fluids. Being dehydrated can increase your risk of a sickle crisis, so get plenty of water -- about 8 glasses a day. Drink more fluid if you’re exercising or in hot weather.
  • Sleep. Get enough.
  • Eat right. Have plenty of fruits, vegetables, whole grains, and protein.
  • Exercise in moderation. Aim for about 2½ hours of moderate exercise a week, such as walking or biking. Talk with your doctor before starting a new exercise routine. Physical activity is key in staying healthy. At the same time, you don’t want to overdo it. Rest when you get tired.
  • Take your medicine. Make sure you take your prescription medicine as directed. Get vaccines, medical and lab tests that your doctor recommends.

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Harmful Things

  • Extreme temperatures. Extreme heat or cold, or any swift changes in temperatures, could set off a crisis.
  • High altitude. Lack of oxygen at high altitudes could trigger a crisis. (Planes, because they’re pressurized, shouldn’t be a problem).
  • Alcohol. It can make you dehydrated.
  • Smoking. This can trigger a lung condition called acute chest syndrome. This is when sickle cells stick together and block oxygen from getting into your lungs.
  • Infections. Common illnesses can be very serious for people with SCD. Wash your hands before eating or after using the bathroom. Wash your fruits and veggies, and avoid raw meat, eggs, and unpasteurized milk.
  • Stress. It’s hard to avoid, but stress can trigger a crisis, so try to take time to relax or find techniques that help you calm down.
  • Heavy physical labor. Though it’s good to get moderate exercise, very intense activities that are exhausting or leave you out of breath should be avoided.

How to Help a Loved One

If your loved one has SCD, you want to help the person to enjoy a normal life. Here are ways you can provide support:

  • Detect signs of crisis. You may be able to tell when your loved one is about to have a sickle cell crisis. Knowing the signs can help you deal with crises quickly or perhaps keep them from happening again.
  • Provide a support system. Be alert to symptoms, be prepared, and make allowances when necessary (especially for children) when SCD effects crop up.
  • Help with pain relief. Take an active role in easing pain. This could mean giving a massage, finding a heat pad, or applying bandages. You could help your loved one with breathing exercises or other diversions to help the person relax.
  • Reach out to support services. Parents of children with SCD have support groups that you may think about joining. There are also social workers and mental health clinicians that can help families deal with the diagnosis.
  • Keep your child’s teachers informed. Make sure that teachers, day care workers and other adults who are entrusted with your child’s care know why he may need more frequent water breaks, bathroom breaks, and other issues. The CDC has published a booklet for teachers on how to help students who have sickle cell disease.

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Mental Health Support

SCD is a lifelong disease. It’s normal for people with a chronic (ongoing) disease to feel sad at times, but if these feelings don’t go away and bother you to the point you’re thinking of harming yourself, get medical care at once.

Sickle cell groups and clinics can counsel you and connect you with support groups with people who are facing similar situations.

When to Get Medical Care

When to Get Medical Care

Keep an eye out for possible problems caused by SCD. If you have any of the following problems, get medical attention right away:

  • Fever of 101 F or higher
  • Chest pain
  • Severe pain that you can’t soothe
  • Severe headache, dizziness or stiff neck
  • Seizure
  • Swelling in your belly
  • Loss of feeling or movement
  • For men, a painful erection that lasts more than 4 hours
  • Problems breathing
  • Sudden loss of vision
WebMD Medical Reference Reviewed by Neha Pathak, MD on February 22, 2017

Sources

SOURCES:

CDC: “Living Well With Sickle Cell Disease,” “Do You Know Someone With Sickle Cell Disease?”

Children’s Sickle Cell Foundation, Inc.: “Tips on Living a Healthy Life with Sickle Cell Disease.”

UCLA Health: “Sickle Cell Disease.”

Sickle Cell Society: “Day to Day Care to People With SCD.”

Mayo Clinic: “Sickle Cell Anemia: Self-Management.”

National Heart, Lung, and Blood Institute: “Living With Sickle Cell Disease.”

National Health Service (U.K.): “Living With Sickle Cell Disease.”

Dana-Farber Boston Children’s: “Sickle Cell Disease in Children.”

St. Jude Children’s Research Hospital: “Taking Control: Teens with Sickle Cell Disease.”

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