Treatment
There is no specific treatment available for Sanfilippo syndrome.
Support Groups
Additional information and resources are available from the National MPS Society.
Prognosis (Expectations)
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.
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Sanfilippo syndrome : Overview, Causes, & Risk Factors
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Sanfilippo syndrome : Symptoms & Signs, Diagnosis & Tests
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Sanfilippo syndrome : Treatment
Review Date : 5/11/2009
Reviewed By : Diana Chambers, MS, EdD, Certified Genetics Counselor (ABMG), Charter Member of the American Board of Genetic Counseling, University of Tennessee, Memphis, TN. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
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