Living with Sickle Cell Disease

Sickle cell anemia is an inherited blood disorder that can cause debilitating pain crises and put patients at increased risk for infections, among other symptoms.

There are several treatments that can help manage the condition, and some lifestyle changes can make it easier to live with the disease.

Pain management

One of the most common and debilitating symptoms of sickle cell anemia is pain. This can be a chronic or constant pain, as well as spikes of sudden debilitating pain called a vaso-occlusive crisis.

Pain also can contribute to fatigue, a common symptom of anemia, as it can be difficult to sleep. The medicines Hydroxyurea or Endari may reduce the frequency of pain crises in some patients. There also are various other treatments to help cope with the pain.

Recognizing and avoiding what triggers a pain crisis can be key to improving quality of life. When a pain crisis occurs, it may help to record what could have been the cause of it in order to narrow down what could be a trigger for a particular patient.

Common triggers include:

  • Dehydration
  • Extreme temperatures, including cold weather
  • High altitudes, as oxygen levels can be lower
  • Overexertion
  • Alcohol and smoking
  • Stress

Some patients find that heating pads, warm baths, massages and physical therapy may help control pain.

Infection management

Avoiding infections is important when coping with sickle cell anemia. Regular vaccinations and treatment with antibiotics as required can go a long way to help reduce the risk they pose. However, there also are several simple measures that can help prevent contracting infections. Examples include:

  • Regular hand-washing
  • Careful food storage and preparation to avoid food poisoning, such as washing surfaces, storing food at the correct temperature, and cooking meat thoroughly
  • Avoiding high-risk foods, including food containing raw eggs or unpasteurized dairy products

Fatigue

Fatigue is a common problem in sickle cell anemia, both due to reduced oxygen levels and disturbed sleep from pain. Folic acid, to increase red blood cell production, may help with this.

Pregnancy

Sickle cell anemia should not reduce a woman’s chance of conceiving. However, there can be increased risks during pregnancy in women with sickle cell anemia, so increased monitoring may be recommended to prevent potential problems.

It is important that a woman who is planning to try becoming pregnant discusses this with a doctor because some sickle cell medications, such as hydroxyurea, may be harmful to a fetus.

Other complications

Sickle cell anemia can lead to a wide range of complications that may require treatment. Some examples include: hearing loss, vision problems, acute chest syndrome, jaundice, priapism (persistent and painful  erections), leg ulcers, gallstones, and stroke.

Sickle cell anemia also can have a negative impact on the mental health of patients and may lead to depression and anxiety. Having a good support network can help keep a positive attitude and help patients seek medical assistance when required.

Various support groups and charities worldwide such as, for example, Sickle Cell Society in the U.K. and the American Sickle Cell Anemia Association, are available to help patients cope with a diagnosis of sickle cell anemia. Many states in America also have their own sickle cell anemia charities.

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Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.