Sickle cell anemia is a serious disease caused by a mutation in the gene that encodes for hemoglobin. Hemoglobin is the protein in red blood cells that is responsible for carrying oxygen from the lungs to various tissues and organs throughout the body. The mutation causes the red blood cells to “sickle” or deform into a crescent-like shape, making it difficult for them to pass through small blood vessels, causing considerable pain.  Sickled red blood cells tend to stick together and form clots.

The symptoms of sickle cell anemia can be quite severe, and new ones can develop over the course of the disease. Patients may seek treatment at emergency care centers, and they are not necessarily equipped to treat sickle cell anemia. For this reason, it is important for patients to work with their physician to develop an individual care plan.

What is an individual care plan?

An individual care 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. The plan 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.

Preparing an individual care plan

An individual care plan should be prepared by the patient’s personal physician or specialist care team. Examples of care plans for sickle cell patients are available from the National Association of School Nurses and Child Health BC, among other groups.

Other information

Everyone responds to pain differently, so it is important to establish a care plan that is effective for the individual patient.

It is important to update the care plan following a vaso-occlusive crisis with information about which medications were effective and which were not, as well as any tests that were performed.

Sickle cell anemia can get worse with time, so it is also important for patients and their caregivers to be aware of any symptoms that may indicate more serious disease, such as blood blockage in the spleen or liver, and record these symptoms in the individual care plan.

***

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.