Disability and Sickle-Cell Anemia: Benefits and Filing Information

Learn about your options for getting Social Security disability benefits based on sickle-cell anemia.

Sickle cell anemia is a disorder in which the body creates red blood cells that are "sickled," which means they are shaped like crescents. Sickled cells get stuck in the blood vessels and block blood flow. Sickled cells also cause anemia, a decrease in red blood cells, because they break down more quickly than regular red blood cells.

Disabling Symptoms of Sickle Cell Anemia

Those with sickle cell anemia suffer many symptoms, including abdominal, bone, and chest pain, difficulty catching their breath, fatigue, fever, rapid heart beat, excessive thirst, frequent urination, and poor eye sight. The symptoms can vary greatly among those with sickle cell anemia.

In addition to constant symptoms, those with sickle cell anemia suffer episodes of more severe illness called crises. The sickle cell crises can vary in frequency, length, and severity. There are four different types of crises:

  • Vaso-occlusive (thrombotic) crisis. Blood flow is restricted to the organs. Can cause organ damage and is very painful.
  • Splenic sequestration crisis. Enlargement of the spleen. Causes the abdomen to become hard. Requires immediate medical attention.
  • Aplastic crisis. Decrease in red blood cells so that they cannot properly carry out their function in the body. Causes fatigue and rapid heart beat.
  • Hemolytic crisis. Rapid decrease in red blood cells. Can cause kidney damage.

There are also many complications that are associated with sickle cell anemia. Some of the complications include stroke, gallstones, malfunctioning of the spleen, bone infections, blindness, skin ulcers, hypertension, and kidney failure.

Getting Disability Benefits for Sickle Cell Disease

Sickle cell anemia can be a serious disease with potentially disabling symptoms, but not everyone with sickle-cell anemia can qualify for disability benefits.  To receive disability benefits from Social Security for sickle cell disease, you must either meet the requirement of Social Security's disability listing for sickle cell disease, have sickle cell symptoms that are considered medically equal to the criteria in the disability listing, or show that the symptoms of your sickle cell disease prevent you from being able to return to work for more than one year.  

(There are also other forms of sickle cell disease, such as sickle  thalassemia, but they generally cause milder symptoms than sickle cell anemia. They would be evaluated by Social Security in the same way.)

Meeting or Equaling the Sickle Cell Disease Listing

To meet the criteria for automatic approval for disability under the sickle cell disease listing, you must show that you have sickle cell anemia with one of the following:

  • Painful blood clots in the blood vessels at least three times in the past five months (called vaso-occlusive or thrombotic crises)
  • Hospitalization beyond that of emergency care at least three times in the past 12 months (could be due to aplastic episodes, hemolytic crises, strokes, heart problems, kidney failure, or pneumonia)
  • Anemia that is severe and chronic, with a persistent hematocrit of 26% or less, or
  • Impairments caused by sickle cells that meet another disability listing, such as congestive heart failure, stroke, kidney failure, or vision problems.

To qualify for disability under this listing, your medical record should include the results of a  test called hemoglobin  electrophoresis and a recent history of your hematocrit levels.  our doctor's notes should include evidence of your crises, including the specific type of crises suffered, the symptoms suffered, and the severity, length, and frequency of the crises.

Inability to Return to Work Due to Symptoms

If you do not meet the sickle cell anemia listing, or any other Social Security disability listing, you may be found disabled if you cannot work due to the limiting effect of your symptoms. Social Security develops a  Residual Functional Capacity (RFC) assessment for you, which includes  your physical, mental, and sensory limitations, to determine if you can work.  

Here are some limitations that an RFC for someone with sickle cell anemia might include. Avoidance of strenous exertion and exposure to cold. In fact, if you have a hematocrit of less than 30% due to anemia, your RFC should be for sedentary work. In addition, pain, fatigue, and shortness of breath may affect one's ability to do any physical work or even work that requires increased standing or walking. In addition,  pain may make it difficult to maintain concentration throughout tasks. Or, for those who suffer from a decrease in eyesight, this could limit their functioning at work and the type of work they could do.

As crises are common for those with sickle cell anemia and can cause significant fluctuations in your ability to function in the workplace, the frequency, duration, and severity of your crises should be noted in your medical record to show Social Security the interruptions in your ability to work.

Social Security will then compare your RFC, which reflects what remaining work activities you can do, to what jobs someone with your job skills, education, and age might be suited for. For information on how this works, see our section on how Social Security decides whether there are jobs you can do.

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