How Will Sanfilippo Syndrome Affect My Child’s Life Expectancy?

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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diagnosed, now what

As a parent, learning that your child has a rare disease like Sanfilippo syndrome, or mucopolysaccharidosis type III (MPS III), can be very difficult. One of the first questions parents often ask is what the diagnosis means for their children’s future, and how the disease is going to affect their son or daughter’s life expectancy.

What is life expectancy?

Life expectancy is an estimate of how long people will live. It is based on their date of birth, where they live, their gender, and other factors. It does not refer to individuals, but to the population as a whole.

How does Sanfilippo syndrome affect life expectancy?

Sanfilippo syndrome is a rare disease, making it difficult to predict how it will affect life expectancy.

Symptoms vary from child to child, making accurate predictions about individual patients impossible.

The current view is that patients with Sanfilippo syndrome will live between 10 and 20 years from when they are diagnosed with the disease. However, some patients have been reported to have lived to age 50.

What factors will affect my child’s life expectancy?

Recent studies on mortality in Sanfilippo syndrome patients indicate that the most common cause of death is respiratory tract infections such as pneumonia.

Many people with Sanfilippo syndrome also have delayed physical and mental development, making accidents and injuries more frequent and potentially reducing life expectancy.

Therefore, taking good care of patients to ensure that infections and accidents are minimized can have a positive impact on life expectancy.

Planning for the future

For most parents, it is likely that their child with Sanfilippo syndrome will need end-of-life care either at home or in a care facility. Depending on the parents’ ages, there also is a possibility that their child will outlive them, or live past the point the parents can provide care.

This is why it is important to plan for your child’s future. Who will take care of them? Will they live in a residential facility? Have you made financial provisions for your child’s needs?

Meeting with a financial adviser and talking to your child’s medical team is the first step in answering these questions.


Last updated: Jan. 3, 2020


Sanfilippo Syndrome 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.