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 the condition 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.
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. The goal is to avoid pain crises (vaso occlusive episodes) and acute chest syndrome (vaso-occlusive episodes in the lung specifically). 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 medical and lab tests that your doctor recommends.
- Stay up to date on vaccines. It is critically important to get all recommended vaccines, including the annual flu shot, and pneumococcal and meningococcal vaccines. Common illnesses, like the flu, can quickly become dangerous if you have SCD. You are also more likely to get certain infections because most people with sickle cell don't have a functional spleen--which is important for protection from certain infections.
- 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. It can also lead to a pain crises when the low oxygen causes sickling and vaso-occlusion.
- 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 they 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.
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
Keep an eye out for possible problems caused by SCD. If you have any of the following problems, get medical attention right away: