Treatment:

There is no specific treatment available for Sanfilippo syndrome.

Support Groups:

Additional information and resources are available from the National MPS Society.

Expectations (prognosis):

The syndrome causes significant neurological symptoms, including severe retardation. IQs may be below 50. Most persons with Sanfilippo syndrome live into their teenage years. Some patients live longer, while others with severe forms die at an earlier age. Symptoms appear most severe in persons with type A Sanfilippo syndrome.

Complications:

• Blindness
• Inability to care for self
• Mental retardation
• Nerve damage that slowly gets worse and eventually requires wheelchair use
• Seizures

Calling your health care provider:

Call your health care provider if your child does not seem to be growing or developing normally.

Call for an appointment with your health care provider if you plan to have children and you have a family history of Sanfilippo syndrome.