Living With Sickle Cell Disease

Care Plan

Because sickle cell disease patients may need to seek care at emergency centers that are not necessarily equipped to treat the disorder, it is important that patients develop an individual care plan with their physician.

This plan contains information about the patient, contact details for the primary care physician and specialists treating the patient, as well as treatment information for specific symptoms, crises, and emergency care. It should be kept on file with the patient’s personal physician, and with a school nurse for patients who are students. The patient should also carry a copy of the plan.

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Eye Disease

Eye disease in sickle cell disease patients can be divided broadly into two conditions: anterior eye disease and posterior eye disease. Anterior eye disease involves the chamber of the eye, while posterior eye disease involves the retina, optic nerve, and the subretinal tissues, the system of blood vessels and cells that provide nutrients to the retina. Sickle cell patients have a very poor tolerance to increased pressure in the eye, so aggressive treatment may be necessary.

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Although the most common symptom of sickle cell disease is pain, fatigue also frequently occurs and can affect patients’ quality of life. This symptom is thought to be the result of insufficient oxygen reaching muscles and other tissues. Sickled blood cells have trouble traveling through the smallest blood vessels, which means that muscles and tissues are not getting the oxygen they need.

Sickle cell disease also causes chronic pain and inflammation, which can interfere with sleep, leading to fatigue. Both chronic and acute pain can make getting a restful sleep difficult.

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Pain Management

One of the most common and debilitating symptoms of sickle cell disease is pain. This can be a chronic or constant pain, as well as spikes of sudden debilitating pain called a vaso-occlusive crisis. 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. Some patients find that heating pads, warm baths, massages and physical therapy may help control pain.

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With proper prenatal care, most women with sickle cell disease have a healthy pregnancy. However, the disease does increase the risk of complications during pregnancy. In addition, the pregnancy itself increases the frequency of vaso-occlusive crises as well as joint pain and inflammation for many women.

Complications can include premature birth (earlier than 37 weeks), low birth weight, and stillbirth. Some medications for pain or disease management also can’t be taken during pregnancy or may worsen the mother’s symptoms.

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Sickle cell disease does not affect children’s ability to learn, but fatigue and recurrent pain can influence how well they are able to concentrate in school. They are also more frequently absent from school than other children because they must attend doctors’ appointments or because they are having painful episodes. Children with the disease may require extra help or adaptations to the usual school routine.

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Sickle Cell Disease in Children

Sickle cell disease is an inherited disorder caused by a mutation in the HBB gene, which provides instructions to build part of hemoglobin, a protein located inside red blood cells and carries oxygen. The faulty hemoglobin is called hemoglobin S and causes the red blood cells to adopt a sickle shape.

In most patients, symptoms appear during the first year of life, often around 5 months of age. Painful episodes occur during childhood, but are less frequent in babies.

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Sickle cell disease patients experience sleep-related complications such as sleep-disordered breathing, a group of conditions where complete or partial cessation of breathing occurs during sleep. Obstructive sleep apnea syndrome is the most common form of this condition, where the patient experiences decreased or no breathing for several seconds during sleep.

This can occur several times during sleep, decreasing the level of oxygen in the blood. Obstructive sleep apnea syndrome causes sleepiness and fatigue during the day.

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