Ask the doctors: SSPE onset can occur years after recovering from measles

Dear Doctor: I’ve heard there’s a serious disease that can happen years after you recover from the measles. Is that true? I thought once the fever and rash are gone, then you’re OK.

Dear Reader: You’re referring to a condition called subacute sclerosing panencephalitis, also referred to as SSPE, which is a progressive neurological disorder that can arise in children and some adults who have had the measles. In most cases of SSPE, measles was contracted at an early age, often younger than 2 years old. Despite having recovered from the initial illness, the measles virus within these patients persists. About six to eight years later, the virus reactivates. The reason why is not yet known.

When this happens, the immune system mounts a response. Symptoms of SSPE begin gradually, with subtle changes in cognition, mood and behavior. This is followed by escalating problems with movement, including uncontrolled spasms in the limbs and body. As the disease progresses, patients may experience seizures and vision loss and become unable to walk.

Although the advance of the disease is gradual, it is relentless. Eventually, the brain loses the ability to direct and control the autonomic nervous system, which oversees breathing, heart rate, temperature and other bodily functions. In some patients, the disease moves swiftly, but most die within one to three years after diagnosis. At this time, there is no known treatment or cure.

Cases of SSPE had long been believed to be quite rare, affecting 4 to 10 of every 100,000 patients who get measles. However, recent studies, one done in Germany and one conducted here at UCLA, suggest the numbers are actually higher. Among the cases studied in California, 1 in about 600 infants under the age of 1 who had the measles went on to develop SSPE years later. When looking at children under the age of 5, 1 in about 1,400 who recovered from the measles was later diagnosed with SSPE. The median age of an SSPE diagnosis was 12. However, researchers found cases in children as young as 3 and in adults as old as 35.

Measles is one of the most infectious diseases in the world. Prior to 1963, when an effective vaccine became widely available in the United States, virtually everyone got the disease by the time they reached their mid-teens. Due to nationwide vaccination efforts, measles was declared eliminated in 2000. However, a series of recent outbreaks have been a cause for concern. It is recommended that children receive their first dose of the measles, mumps and rubella (MMR) vaccine between the ages of 12 to 15 months. This must be followed up with a second dose between the ages of 4 to 6 years. If they are traveling abroad, infants between the ages of 6 and 11 months should also receive a dose of the MMR vaccine.

A major study, the most recent to debunk a connection between vaccinations and autism, was published in March. Researchers studied data from 650,000 children born in Denmark between 1999 and 2010. They found no connection between the MMR vaccine and autism, even among those with risk factors for the disorder.